MAKING PROCESS WHEN CHOOSING TREATMENTS FOR THEIR CHILDREN WITH AUTISM SPECTRUM DISORDERS By JILL LYNN PINEDA A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2014
Â© 2014 Jill Lynn Pineda
To Mom, Dad, Holly and Steve
4 ACKNOWLEDGMENTS First and foremost, I would like to thank my Mom, Earla Turcich, for encouraging me and supporting me throughout my life. She has inspired me through her selflessness, determination, and her ambition for helping others. I have no doubt that I would not be where I am today without her constant encouragement, words of wisdom, and consolation. Words cannot express the eternal gratitude I have for her and the sacrifices she has made so that I can pursue my dreams. I am forever grateful for best friend and husb and, Steve Pineda, for his unwavering encouragement and support as I worked on this project. His selflessness, strength, and willingness to listen have helped me to overcome some of the most difficult obstacles we have faced in the past five years. He con tinues to help me realize the importance of a balanced work life, reminding me that it is essential to make time for the aspects of life that matter most. I would also like to express gratitude to my supportive doctoral committee and mentors. In particular , I am grateful for my chairperson, Dr. Nancy Waldron. I appreciate her collaborative spirit, reassurance, and experienced advice as I conducted my first qualitative research study, as well as her support for my endeavors throughout my graduate school care er. I would also like to thank Dr. Diana Joyce for her encouragement and dedication as a practicum supervisor and faculty member. Her positive demeanor, encouragement, and extensive knowledge have been instrumental in my growth across areas of research and practice across the past 5 years. I would like to thank Dr. Marcia Leary and Dr. Krestin Radonovich for their invaluable supervision and the mentorship they have provided in my area of specialization working with children with low incidence disabilities. I can only hope to emulate their leadership,
5 dedication, and creativity as I continue to serve children with complex needs. Finally, I would like to thank Dr. Timothy Vollmer for the opportunity to learn the most evidence based practices for children wit h developmental disabilities within an Applied Behavior Analysis course focused on research, practice, and ethical responsibility within the field, as well as his contributions to this project. This study would not have been possible without the meaningful contribution from parent participants. I am forever appreciative for the stories, experiences, and candid responses from the parents whom I interviewed. Parents allowed me to take a brief glimpse into their lives, providing me with a better understanding of the challenges they face on a daily basis. They invited me to join them in their homes, therapies, and daily activities as they helped me to understand their experiences. I am touched by the dedication, love, and commitment that they have for their chil dren, doing whatever they inform my own professional practices for years to come. I would not have been able to persist through graduate school without the support of step dad, Jim Turcich for offering his support and sense of humor when it is needed most. I would like to thank my sister, Holly Turcich, for her endless love and support. I am gr ateful for my loving grandparents, Harold and Jeannine Tingler. I have been blessed to share so many wonderful years with them and am thankful that they have always believed in me. Furthermore, I am grateful for my incredible graduate school cohort and fut ure colleagues (Angell Callahan, Alyson Celauro, Maggie Clark, Sally Grapin, Akiko Goen, Nicole Jean Paul, Michelle Judkins, Gillian Lipari, April Ponder,
6 Jeanette Rodriguez, and Yulia Tamayo) for all the laughs, study sessions, and memories we have shared . In particular, I would like to thank Sally Grapin and Kaycee Reese for their invaluable friendship during the most fun and challenging times in graduate school. I know we will fo rever be colleagues and friends.
7 TABLE OF CONTENTS page ACKNOWLEDGMENTS ................................ ................................ ................................ .. 4 ! LIST OF TABLES ................................ ................................ ................................ .......... 10 ! LIST OF FIGURES ................................ ................................ ................................ ........ 11 ! LIST OF ABBREVIATIONS ................................ ................................ ........................... 12 ! ABSTRACT ................................ ................................ ................................ ................... 13 CHAPTER 1 INTRODUCTION AND RATIONALE FOR THE STUDY ................................ ......... 15 ! 2 REVIEW OF THE LITERATURE ................................ ................................ ............ 20 ! Parents of Children with Autism Spectrum Disorder: Early Indicators and Obstacles ................................ ................................ ................................ ............. 20 ! Referral Sources and Perspectives of Pediatricians and Parents ........................... 21 ! Treatments and Interventions for Autism Spectrum Disorders ................................ 24 ! ................................ ....... 26 ! Established treatments ................................ ................................ .............. 27 ! Emerging treatments ................................ ................................ .................. 28 ! Unestablished treatments ................................ ................................ .......... 28 ! Ineffective or harmful treatments ................................ ................................ 29 ! National Professional Development Center (NPDC) ................................ ........ 30 ! Differentiation between National Standards Report and NPDC ........................ 31 ! Family Centered Care and Supporting Family Choic e ................................ ............ 33 ! Shared Decision Making ................................ ................................ ......................... 34 ! Parental Causal Beliefs and Treatment Choices for ASD ................................ ....... 38 ! Selection ................................ ........... 43 ! Conclusions ................................ ................................ ................................ ............ 50 ! Limitations of Current Research ................................ ................................ ............. 51 ! 3 METHODOLOGY ................................ ................................ ................................ .... 53 ! Purpose of the Study and Research Questions ................................ ...................... 53 ! Qualitative Research Methods ................................ ................................ ................ 55 ! Description of Participants ................................ ................................ ...................... 56 ! Data Collection Procedures ................................ ................................ .................... 62 ! Overview of Data Collection ................................ ................................ ............. 62 ! Recruitment of Participants ................................ ................................ .............. 62 ! Purposeful Sampling ................................ ................................ ........................ 64 ! Semi Structured Interviews ................................ ................................ .............. 65 !
8 Field Notes ................................ ................................ ................................ ....... 70 ! Data Analysis ................................ ................................ ................................ .......... 71 ! Grounded Theory ................................ ................................ ............................. 71 ! Constant Comparative Analysis ................................ ................................ ....... 72 ! Quality Indicators ................................ ................................ ................................ .... 75 ! Credibility ................................ ................................ ................................ .......... 75 ! Dependability ................................ ................................ ................................ .... 77 ! Transferability ................................ ................................ ................................ ... 78 ! ................................ ................................ .......... 79 ! 4 RESULTS ................................ ................................ ................................ ............... 82 ! Defining a Grounded Theory ................................ ................................ ................... 82 ! Th e Grounded Theory ................................ ................................ ............................. 83 ! Part I: Process of Diagnosis ................................ ................................ ............. 86 ! Initial concerns ................................ ................................ ........................... 86 ! Affirmation from others ................................ ................................ ............... 87 ! Init ial contact with health care provider/pediatrician ................................ ... 89 ! Referral to specialist or another professional for a second opinion ............ 92 ! Part II: Reaction to Diagnosis ................................ ................................ ........... 94 ! Part III: Process of Treatment Selection ................................ ........................... 97 ! Information seeking and information sources ................................ ............. 98 ! Barriers to treatment ................................ ................................ ................ 101 ! Treatment selection ................................ ................................ ................. 110 ! Evaluation of effectiveness ................................ ................................ ...... 120 ! Part IV: Shared Decision Making ................................ ................................ .... 128 ! Parent Provider Interactions ................................ ................................ ........... 129 ! Rationale for the Selection of Two Parent Expe riences to Illustrate the Theory ... 134 ! 5 ............................. 135 ! Vignette One: Victoria ................................ ................................ ........................... 138 ! Process of Diagnosis ................................ ................................ ...................... 139 ! Initial concerns ................................ ................................ ......................... 139 ! Affirmation from others ................................ ................................ ............. 143 ! Pediatrician and referrals to specialists ................................ .................... 143 ! Reaction to Diagnosis ................................ ................................ ..................... 145 ! Treatment Selection ................................ ................................ ....................... 147 ! Information sources ................................ ................................ ................. 147 ! Barriers to treatment ................................ ................................ ................ 148 ! Treatment selection ................................ ................................ ................. 150 ! Evaluation of effectiveness ................................ ................................ ...... 153 ! Shared Decision Making and Interactions with Providers ............................... 158 ! Vignette Two: Stephanie ................................ ................................ ....................... 160 ! Process of Diagnosis ................................ ................................ ...................... 161 ! Initia l concerns ................................ ................................ ......................... 161 ! Affirmation from others ................................ ................................ ............. 162 !
9 Pediatricians and referrals to specialists ................................ .................. 162 ! Reaction to Diagnosis ................................ ................................ ..................... 165 ! Treatment Selection ................................ ................................ ....................... 167 ! Information sources ................................ ................................ ................. 167 ! Barriers to treatment ................................ ................................ ................ 169 ! Treatment selection ................................ ................................ ................. 171 ! Evaluation of effectiveness ................................ ................................ ...... 175 ! Shared Decision Making and Interactions with Providers ............................... 178 ! 6 DISCUSSION AND IMPLICATIONS ................................ ................................ ..... 180 ! Discussion of the Findings ................................ ................................ .................... 180 ! Types of Treatments ................................ ................................ ............................. 183 ! Implicat ions ................................ ................................ ................................ ........... 183 ! Identification and Diagnosis ................................ ................................ ............ 184 ! ................................ ................................ ...... 185 ! Health Care Providers as an Information Source ................................ ........... 186 ! Barriers to Treatment ................................ ................................ ...................... 187 ! Treatm ent Selection ................................ ................................ ....................... 188 ! Evaluation of Effectiveness ................................ ................................ ............ 189 ! Shared Decision Making ................................ ................................ ................. 191 ! Limitations of the Study ................................ ................................ ......................... 191 ! Re commendations for Future Research ................................ ............................... 194 ! APPENDIX A INFORMED CONSENT FORM ................................ ................................ ............. 200 B INTERVIEW GUIDE ................................ ................................ .............................. 200 C PARENT DEMOGRAPHIC INFORMATION FORM ................................ .............. 202 ! LIST OF REFERENCES ................................ ................................ ............................. 203 ! BIOGRAPHICAL SKETCH ................................ ................................ .......................... 209 !
10 LIST OF TABLES Table page 3 1 Participant characteristics ................................ ................................ ................... 60 ! 3 2 Participant treatment choices ................................ ................................ ............. 61 ! 4 1 Treatment Selection: Criteria for Assessment Question O ne. .......................... 111 ! 4 2 Treatment Selection: Criteria for Assessment Question Two. .......................... 114 ! 4 3 Treatment Selection: Criteria for Assessment Question Three. ........................ 118 ! 4 4 Evaluation of Effectiveness: Criteria for Assessment Question One. ............... 121 ! 4 5 Evaluation of Effectiveness: Criteria for Assessment Question Two. ............... 126 ! 4 6 Conditions for Evaluating Parent Provider Interactions. ................................ ... 130 !
11 LIST OF FIGURES Figure page 4 1 ........ 85 !
12 LIST OF ABBREVIATIONS ABA Applied Behavior Analysis ADHD Attention Deficit Hyperactivity Disorder ADOS Autism Diagnostic Observation Schedule ASD Autism Spectrum Disorder CAM Complementary and Alternative Medicine CARD Center for Autism and Related Disabilities EBP Evidence Based Practice ESE Exceptional Special Education IRB Institutional Review Board M CHAT Modified Checklist for Autism in Toddlers NAC National Autism Center NCLB No Child Left Behind NPDC National Professional Development Center OT Occupational Therapy PCIT Parent Child Interaction Therapy PDD NOS Pervasive Developmental Disorder Not Otherwise Specified PECS Picture Exchange Communication System PT Physical Therapy SDM Shared Decision Making
13 Abstract of Dissertation Presented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy MAKING PROCESS WHEN CHOOSING TREATMENTS FOR THEIR CHILDREN WITH AUTISM SPECTRUM DISORDERS By Jill Lynn Pineda August 2014 Chair: Nancy Waldron Major: School Psychology This qualitative research study sought to understand the process in which parents made treatment decisions for their children with Autism Spectrum Disorders (ASD). More specifically, the study examined the process of diagnosis and treatment selection, incl uding information sources, barriers to treatment, when parents decide to pursue treatments, and how parents evaluate the effectiveness of treatments. Finally, decision making process. Qualitative methodology was used to gain a deep, meaningful understanding of selection, their reactions to diagnosis, and their experiences and impressions from in teractions with health care professionals throughout the process. To obtain this rich information, data was collected over a 6 month period through two to three individual interviews with eight parent participants. Data analysis included coding, creating c ategories that emerged from the codes, recognizing patterns, and identifying themes and steps in their decision making process.
14 diagnosis, reaction to diagnosis, and treatment s election. Within the process of diagnosis, parents expressed 4 major steps in the process: 1) initial concerns about their child; 2) affirmation from others validating their concerns; 3) initial contact with a health care provider or pediatrician; and 4) r eferral to a secondary provider. Parents reported multiple delays to diagnosis including providers dismissing their concerns and wait time between referrals to specialists. Secondly, parents described their reactions to their child receiving a diagnosis, r eporting feelings of relief and gratification, as well as parents reported 4 major steps in the process: 1) information seeking; 2) barriers to treatment; 3) trea tment selection; and 4) evaluation of effectiveness. Parents reported utilizing several assessment questions when deciding whether or not to pursue a treatment and determining effectiveness of treatments. In addition, parents reported their experiences an d interactions with health care professionals throughout the decision making process, including their experiences with shared decision making. Finally, implications, limitations, and suggestions for future research are discussed.
15 CHAPTER 1 INTRODUCTION AND RATIONALE FOR THE STUDY Parents of children with disabilities are faced with making decisions about the services they pursue for their child. The rising prevalence of Autism Spectrum Disorders (ASD) has spurred the development of a number of options for interventions, healthcare decisions, and educational planning for families of children with ASD. The most recent March 2014 report from the Centers for Disease Control and Prevention indicated that the prevalence of autism has risen to 1 out of every 68 births in the United States and almost 1 in every 42 boys (Centers for Disease Control & Prevention, 2014). Children diagnosed with ASD exhibit persistent deficits in social communication and the presence of restricted repetitive patterns of b ehavior, with symptoms present in the early developmental period (Autism Speaks, 2014). Autism Spectrum Disorders have previously been diagnosed under the category of Pervasive Developmental Disorders, and included the diagnoses of autistic disorder, Asper developmental disorder not otherwise specified (American Psychiatric Association, 1994). Recent changes to the Diagnostic and Statistical Manual of Mental Disorders (5th edition) collapsed the previously distinct subtypes in to a unifying diagnosis of Autism Spectrum Disorder (ASD), with specifiers for level of severity and support needed (American Psychiatric Association, 2013). Research suggests possible links to biological and environmental factors that may be associated with autism, but to date, there is no known cause. Research over the past several decades indicates the prognosis is variable, but the symptoms of autism are most effectively managed by early identification and intervention (Simpson, 2008).
16 Despite the im portance of early identification and intervention, previous research has indicated numerous obstacles can delay access to evidence based services that report seeking four to five professionals before ever receiving the diagnosis (Goin Kochel, Mackintosh, & Myers, 2006). Furthermore, studies have found that parents report a delay between the time they received a diagnosis for their child and the time they received support f rom professionals in the form of recommendations about treatments, local agencies, and support groups available to them (Braiden, Bothwell, & Duffy, 2010). Parents of children with autism are presented with a vast number of available treatments and are coo once (Green, 2007). Treatments for autism can be expensive and time consuming, costing an estimated $3.2 million per individual over the lifespan (Ganz, 2007). For this reason, financial considerat ions can play a critical role in treatment selections, depending on insurance coverage or family finances. The lack of understanding about the cause of autism makes parents of children with autism even more susceptible to considering and using unproven, an d even controversial treatments. controversial, fad, and unsupported treatments as the pervasive developmental (2005) identified several possible reasons that parents may fall victim to fad treatments for autism. Parents may feel pressure to provide early intervention, which may lead them to try shot gun approaches in the hope that something will work. Second, par ents may be more susceptible to fad interventions due to a lack of knowledge about autism and
17 evidence based treatments. A third set of reasons that parents may be prone to fad treatments is that many professionals may not be familiar with autism, and may provide different, and even conflicting information about what is best for their child (e.g. pediatrician vs. biomedical doctor). Researchers have attempted to differentiate practices based on scientific research, sifting evidence based treatments from th ose that are emerging/promising practices, controversial, or considered harmful or unsupported (Simpson, 2008; National Autism Center, 2009; The National Professional Development Center, 2012). The National Autism Center (2009) released a National Standar ds Report reviewing all research conducted involving children with Autism Spectrum Disorders (ASD) under the age of 22, that met criteria for experimental rigor based on the research design, measurement of the dependent and independent variables, participa nt ascertainment (ensured eligibility of participants was based on well established diagnostic tools and procedures), and generalization of results across time, settings, stimuli, responses or persons. The National Standards Report was released in the hope that parents, caregivers, educators, and service providers have current, reliable and accessible information when making important decisions about treatment for children with autism spectrum disorders (National Autism Center, 2009). It is recommended that parents and professionals ask some basic questions about a treatment to facilitate their selection of a program or method. Simpson (2008) suggests parents and professionals ask about the efficacy and anticipated outcomes that align with a particular treat ment, and whether or not that practice aligns with the individual needs of the child. In addition, parents should inquire about the potential risks
18 associated with the treatment and the most effective means of evaluating whether or not the treatment or app roach was successful for the child (Simpson, 2008). Although these recommendations are made, it is unclear whether or not parents deliberately inquire about treatments, and research is needed to determine how they decide what treatments to select. There i s research that has investigated what treatments parents of children with autism choose, what treatments they have tried in the past (Green et al., 2006; Anbar, Dardennes, Prado Netto, Kaye, & Contejean, 2010), from whom parents seek information when selec ting treatments (Anbar et al.,2010) and how parental causal beliefs about autism influenced their future decisions and/or treatment choice (Hebert & Koulouglioti, 2010; Dardennes et al., 2011; Dale, Jahoda,& Knott, 2006; Harrington, Rosen & Garnecho, 2006; Mercer, Creighton, Holden, & Lewis, 2006; Selkirk, Veach, Lian, Schimmenti, & LeRoy, 2009; Harrington, Patrick, Edwards, & Brand, 2006). Based on implications from previous studies and recommendations for future research, researchers have noted the need t making process so that professionals can aide parents in the process, ensuring that children and families receive the most effective, evidence based treatments. Overwhelmingly, it is quantitative research findings that have c ontributed to the understanding of treatment use. A qualitative research approach may provide a deeper understanding of the process by which parents obtain information about treatments, choose particular treatments, evaluate effectiveness, and discontinue ineffective methods. Qualitative research on decision making in other fields has been conducted on how parents make
19 Dahlgren & Helseth, 2010), and their perspectives on sh ared decision making when choosing treatments for attention deficit hyperactivity disorder (ADHD) (Fiks, Hughes, Gafen, Guevara, & Barg, 2010). Only two studies were identified in the literature that ment selections in the area of treatments for their children with ASD in Taiwan. Green (2007) followed up with parents who completed an internet survey about their treatment use in a previous study, asking about their experiences with the three treatments that were most frequently used: Applied Behavior Analysis, Sensory Integration, and a combination of Vitamin B6 and election of treatments for ASD was obtained from these studies, it is important to consider the decision making process of parents within the United States health care system. Additionally, more information is needed about treatment selection across a wide variety of treatments, the information sources parents utilize, how parents evaluate effectiveness of treatments, and what parents perceive as areas in which professionals can support them throughout the process of diagnosis and treatment selection in the future.
20 CHAPTER 2 REVIEW OF THE LITERATURE The following literature review will explore topics relevant to understanding making processes when choosing treatments and interventions for their child with an ASD. Early indicators and obstacles of parents of children with ASD will be discussed, in addition to referral sources for diagnosis. Parent and pediatrician perspectives on the health care needs of children with ASD will also be discussed. Moreover, treatment options for ASD will be outlined, separated by scientifically based pra ctices, emerging or promising practices, controversial practices, and practices that are considered harmful or are not recommended. Additional areas that will be covered include: challenges/barriers for parents, recommended practices for professionals rega rding family centered care and shared decision making, and the influence of parental causal beliefs on treatment choices for children with ASD. This review will conclude with a discussion of the major findings of the review, identify gaps in the existing p rofessional literature, and provide support for conducting the current research study. Parents of Children with Autism Spectrum Disorder: Early Indicators and Obstacles specialized inte rvention services at young ages show significant gains in cognitive and adaptive functioning and may be more likely to achieve fully integrated classroom child diagnosed with an ASD are faced with the challenge of not only raising a child with a disability, but sifting through an overwhelming abundance of information available about autism via internet, family, television, and the number of professionals that they
21 see on a regu lar basis (Jacobson et al., 2005). Parents of children with ASD are able to the age of 12 to 18 months (Coonrod & Stone, 2004; De Giacomo & Fombonne, 1998). Research o n early behavioral indicators of ASD note that children with ASD can be differentiated from typically developing children and children with other developmental delays by the second year of life (Wetherby et al., 2004). A diagnosis can consistently be made by the age of 24 months through the use of diagnostic instruments such as the Autism Diagnostic Observation Schedule Toddler Module which have been developed for earlier diagnosis and use with infants and young toddlers (Luyster et al., 2009). truggles begin even before treatment selection, contacting four to five professionals, on average, before even receiving a diagnosis of ASD (Goin Kochel, Mackintosh, & Myers, 2006). Currently, the average age of diagnosis for children with ASD is around 4 years of age for children in underserved communities and children with higher intellectual functioning, leaving a large gap of time where parents could be accessing early interventions for their child (Croen, Grether, & Selvin, 2002; Mandell, Listerud, Lev y, & Pinto Martin, 2002; Yeargin Allsopp, 2008). Referral Sources and Perspectives of Pediatricians and Parents potential to play a pivotal role in the early detection of ASD, providing screening and monitoring of developmental milestones for all children (Rhoades, Scarpa, & Salley, 2007; Committee on Children with Disability, 2001). Often, the pediatrician serves as the first line of defense when evaluating developmental miles tones and may have the responsibility of referring the child and family to a specialist for more diagnostic testing. However, Ming et al. (2011) noted that the majority of the children with ASD were
22 referred by parents to a clinic for specialty evaluations , with few referrals from primary care physicians. Primary care physicians were much more likely to refer non ASD cases to the clinic. The authors of the study noted possible reasons for predominantly parent referred cases of ASD. They noted that it may be due to parents choosing to bypass the cumbersome health care system, skipping primary care evaluations and directly contacting the clinic. Parents may also be utilizing the widely available information on the internet to self refer their child. In additi on, the authors were concerned that ASD may be under recognized by pediatricians or the current health care system and limited time with the patients may result in lower physician referral rate to specialists for diagnostic evaluations of symptoms of ASD ( Ming et al., 2011). Carbone, Behl, Azor, and Murphy (2010) explored differences between perceptions of parents and pediatricians regarding the medical care needs of children with ASD and their families. Parents and pediatricians attended two focus groups, discussing unmet needs. Parents perceived a lack of support and coordinated care from their pediatricians, stressing that pediatricians did not contribute to treatment decisions for their children with ASD (Carbone et al., 2010). They felt that their know ledge of their child was not recognized making with the From parent comprehensive care and coordination of services for their children. Parents described themselves as care coordinators for their own children, coordinating betwee n physicians, occupational therapists, speech therapists, teachers, and behavioral
23 specialists (Carbone et al., 2010). They suggested that pediatricians needed more expertise in autism, and more training in the use of standardized screening tools and presc ription of commonly used medications. A few parents shared the frustration they felt when their pediatrician ignored their initial concerns about the red flags they were s (e.g. psychologists and psychiatrists) or seek care under a new physician (Carbone et al., 2010). Regarding pediatricians, perceptions of their own roles in the care of children with ASD varied widely. Some pediatricians described themselves as advocates , care coordinators, and referral sources for families. However, others said that they rarely saw the child with autism for reasons other than well visits or acute illnesses (Carbone et al., 2010). Pediatricians noted that they were too busy to spend a sig nificant amount of time talking to parents about treatments, have never coordinated with schools regarding the community resources and treatments for ASD (Carbone et al., 2010). They noted a lack of time, reimbursement, awareness of community resources, and expertise in behavioral management as leading barriers to the delivery of care for children with ASD. Pediatricians noted that they are mandated by the American Academy of Pedi atrics to diagnose early and should be implementing autism screening tools such as the Modified Checklist for Autism in Toddlers (M CHAT), but they did not have adequate treatment resources available to provide to the family (Carbone et al., 2010). As comp lementary and alternative medicine (CAM) for children with ASDs has become more prevalent, it is not surprising that this is often a topic that arises in parent
24 pediatrician discussions. Complementary and alternative medicine (CAM) is defined as re lated products and practices which are not accepted presently as a part of acupuncture, special diets, sensory integration, and the use of vitamins and minerals as a treatment. Carbone et al. (2010) found that parents described physicians as uninformed, lackadaisical, or unsupportive when discussing the possibilities of these treatments for their child with ASD. Despite the lack of support, parents said they continued to use CAM for their children without the involvement of their pediatrician. Pediatricians, on the other hand, reported that they had all been approached by parents about CAM, including special diets and alternative medications. Pediatricians noted that families te nded to bring up the discussion about CAM after they had already initiated these treatments. Physicians voiced their concerns about the scientific evidence linked to CAM treatments, and ranged from neutrality regarding the interventions to negativity stemm ing from concerns about risk to the child, excessive cost, or a lack of evidence (Carbone et al., 2010). Overall, there appears to be a disconnect between the desires of parents when seeking information and medical care from their pediatricians and the act ual delivery of services. Although some pediatricians felt confident as care coordinators for their patient with autism, many felt unprepared to deliver quality care and initiate discussion of treatment options with the families of children with ASD (Carbo ne et al., 2010). Treatments and Interventions for Autism Spectrum Disorders It is important to recognize the availability of treatments for ASD and the process in which evidence based treatments are identified. The following section will address the vari ous treatments available worldwide for ASD, the movement toward identification
25 of evidence based treatments, and two leading organizations that have independently identified the evidence based practices for ASD: The National Autism Center (NAC) and the Nat ional Professional Development Center (NPDC). A comparison of the findings of the two reports will also be discussed. Green et al. (2006) revealed that, collectively, parents of children with ASD around the world were using 111 different treatments for th eir child and on average, were using seven to eight treatments at one time. A closer look at the results revealed that the presence or absence of empirical evidence for treatments or interventions did not differentiate between commonly used treatments and those that were rarely used by families (Green et al., 2006). The study inquired about treatments that were currently being used and treatments that parents had tried in the past. The results reflect some of ments that had a high frequency of previous use, but limited current application. These treatments included the weighted vest/blanket, facilitated communication, auditory integration training, holding therapy, infant massage, extended breast feeding, and s everal types of medications (Green et al., 2006). Many of these treatments had little to no evidence base, and some were later announced to be harmful to the child. However, the results do not indicate why parents may have implemented a treatment for some time, and then later abandoned it. Green et al. (2006) stressed the importance of future research to identify factors that influence The plethora of treatment options for children with AS D has long been an obstacle for parents when deciding where to start after receiving a diagnosis (Jacobson et al., 2005). To make the most informed choices, decision makers should be able to
26 differentiate treatments that are evidence based from those that are not. As No Child Left Behind (NCLB) mandated educational policies in the United States to implement scientifically based practices, it has become increasingly important to identify these practices and make the knowledge accessible to teachers and profe ssionals serving children (U.S. Department of Education, 2012). Several different state and national agencies have attempted to compile a list of evidence based practices for children with slightly, but findings generally overlap. New York State Department of Health, Early Intervention Program (1999) published clinical practice guidelines for the treatment of young children with ational Interventions for Children with Autism published a report identifying the best available treatment programs. More information was needed because the review of the literature was done before the turn of the 21 st century and evidence based practice guidelines have since evolved (National Autism Center, 2009). The National Autism Center (2009) released a National Standards Report reviewing all research conducted involving children with ASD under the a ge of 22 that met criteria for experimental rigor based on the research design, measurement of the dependent and independent variables, participant ascertainment (ensured eligibility of participants was based on well established diagnostic tools and proced ures), and generalization of results across time, settings, stimuli, responses or persons. A model was developed for evaluating the scientific literature based on guidelines by multiple organizations and agencies including the American Psychological Associ ation Presidential Task Force on Evidence Based Practice and the Task Force on Evidence
27 Based Interventions in School Psychology. The National Standards Report reviewed all educational and behavioral treatment literature targeting the core characteristics of ASD between the years of 1957 and fall of 2007 and provided information about treatment effectiveness based on age, diagnostic groups, and treatment targets. The report had three primary purposes: 1.) to identify the level of research support currently available for educational and behavioral interventions for individuals with ASD below the age of 22; 2.) to help parents, caregivers, educators and service providers to integrate critical information in making treatment decisions; 3.) to identify limitatio ns of existing research involving individuals with ASD (National Autism Center, 2009). Treatments were classified as established (evidence based), emerging, unestablished, or ntiate treatments based on quality, quantity, and consistency of research findings for each intervention. Established t reatments that were backed by several published, peer reviewed studies that resulted in beneficial treatment affects for a specific targeted behavior (National Autism Center, 2009). The evidence based practices and corresponding number of supporting studies include: antecedent modifications (99 studies), beha vioral package (231 studies), comprehensive behavioral treatment (22 studies), joint attention interventions (teaching pointing, showing, or following eye gaze) (6 studies), modeling (50 studies), naturalistic teaching strategies (32 studies), peer trainin g techniques (33 studies), pivotal response training (14 studies), schedules (12 studies), self management (21 studies), and story based interventions (e.g. social stories) (21 studies) (National Autism Center, 2009).
28 Over two thirds of the established tre atments came exclusively from behavioral literature in the fields of applied behavior analysis (ABA), behavioral psychology, and positive behavior supports. Emerging t reatments Emerging treatments were those for which one or more studies suggested the int ervention may produce positive outcomes, but additional high quality studies are needed before the reviewers are fully confident that the treatments are effective. The supporting studies in the literature: augmentative and alternative communication device (AAC) (14 studies), cognitive behavioral intervention Package (3 studies), developmental relationship based treatments (7 studies), exercise (4 studies), imitation base d interaction (6 studies), initiation training (7 studies), language training production (13 studies), language training production and understanding (7 studies), massage/touch therapy (2 studies), multi component package (10 studies), music therapy (6 studies), peer mediated instructional arrangement (11 studies), picture exchange communication system (13 studies), reductive package (33 studies), scripting (6 studies), sign instruction (11 studies), social communication intervention (5 studies), social skills package (16 studies), structured teaching (4 studies), technology based treatment (19 studies), and theory of mind training (4 studies) (National Autism Center, 2009). Unestablished t reatments Unestablished Treatments were those for which there is little or no evidence in the scientific literature that allows one to draw firm conclusions about their effectiveness for individuals with ASD (National Autism Center, 2009). Based on the limited quality
29 and rigor of the research, limited consistency in re sults, or inadequate number of supporting studies in the existing literature, there is no reason to assume these treatments are effective, nor is there a way to rule out the possibility that they are ineffective or harmful. In addition, some research find ings did not apply to individuals with ASD, making it impossible to deduce what the effects of treatment may be. The unestablished treatments include: academic interventions (10 studies), auditory integration training (3 studies), facilitated communication (5 studies), gluten and casein free diet (2 studies), and sensory integration packages (7 studies) (National Autism Center, 2009). It is important to note that with the growing number of treatments, many more treatments that have not yet been investigate d scientifically will also be classified as unestablished. Any treatments for which studies were not published in peer reviewed journals are also considered to be unestablished within the report. Ineffective or harmful t reatments Ineffective or harmful tre atments are those for which several studies with methodological rigor have shown the treatment or intervention to produce ineffective or harmful outcomes (National Autism Center, 2009). Not surprisingly, no treatments have sufficient evidence specific to A SD to meet these criteria. Preliminary findings which suggest a treatment is ineffective influence researchers to change the direction of their research, rather than producing fruitless efforts. Although research exists on treatments that are harmful to ot her populations, researchers who are ethical are not going to apply harmful treatments to children with autism spectrum disorders for the sole purpose of proving that it is ineffective.
30 National Professional Development Center (NPDC) More recently, the National Professional Development Center (NPDC) on ASD reviewed the same literature to establish evidence based practices for individuals with ASD below the ages of 22 years (NPDC, 2012). They used a similar evaluation process as the Nat ional Standards Project, including literature up to and including 2007, with studies applying rigorous methodology. The NPDC considered practices to be evidence based if efficacy was established through peer reviewed research in scientific journals. They the following mix of available designs and research: two high quality experimental or quasi experimental group design studies; single subject designs conducted by three different invest igators across at least five high quality single subject design studies; or a combination of one high quality randomized or quasi experimental group design study and three high quality single subject design studies conducted by at least three different inv estigators or research groups. The NPDC analyzed focused intervention practices, 20 12, p.1). These practices should provide specific information about steps involved in implementation. There are 24 evidence based practices for autism spectrum disorders according to the NPDC. They include: antecedent based interventions, computer aided in struction, differential reinforcement, discrete trial training, extinction, functional behavior assessment, functional communication training, naturalistic intervention, parent implemented intervention, peer mediated instruction and intervention, picture e xchange communication system (PECS), pivotal response training, prompting, reinforcement, response interruption/redirection, self management, social narratives,
31 social skills groups, speech generating devices, structured work systems, task analysis, time d elay, video modeling, and visual supports (NPDC, 2012). The slight differences in evaluation criteria by the NPDC led to a variation in results compared to the National Standards Report (2009), but overwhelmingly, the outcomes were consistent. Differentia tion between National Standards Report and NPDC There were some noted differences between the two reports. While the National Standards Report focused on either intervention strategies or broad treatment packages (e.g. a combination of different interventi on strategies that have many characteristics in common) as their unit of analysis, the NPDC looked at focused intervention practices. to slightly different outcomes . A third reason for the difference between the two reports is that the National Standards Report classified varying levels of support for practices based on the amount and quality of research available, identifying practices as established, emerging, unes tablished, and ineffective. The National Standards Report base but needed additional high quality studies to show consistent outcomes for individuals with ASD. The NPDC only reported evidence b ased practices. Overwhelmingly, the results were consistent across the two reports. The only practices that were considered to be evidence according to the National Standards Report w ere: social skills training groups, speech generating devices, computer aided instruction, picture exchange communication system, and extinction (NPDC, 2012). Despite conducting comprehensive classifications of evidence based practices, it is clear that ev en the National Professional Development Center and the National
32 The variation in criteria for studies with rigorous methodology, organization of practices (grouped or f ocused intervention practices), and the categorization of levels of support (evidence based practices vs. emerging, unestablished, or ineffective) reflects the studi based practices. The National Standards Project aimed mainly at including studies that were educational and behavioral treatments. They excluded studies that were missing empirical data , statistical analyses for studies with a group research design, linear graphical representations of data for single subject research, or relied on qualitative methods. They chose to leave out qualitative method after consultation with a professional with expertise in qualitative research design, who noted that the majority of qualitative treatment research focuses on mediating or moderating variables, which were not the focus of the National Standards Project. In addition, they excluded children with unco mmon comorbid conditions and only focused on interventions targeted toward the children themselves, rather than parents, caregivers, or support personnel. It is important to understand that even boards of professionals in these two organizations came to sl ightly different conclusions about which types of research should be included in the consideration, and therefore, which practices are determined to be evidence based. If it is difficult for even professionals with expertise in the area of ASD to agree on parents to sift through the vast amount of available research to select treatments for their child.
33 Family Centered Care and Supporting Family Choice Parents and caregivers are the prima ry decision makers when it comes to However, it is critical that there is shared responsibility between parents and professionals when making informed decisions abou t what treatments or methods to the decision making process is recommended practice in the field of early childhood choices of treatments have similar philosophical and theoretical orientation to the professional, the treatment selection process tends to be a smooth process. However, when the family wants to try methods that the professional does not support, the process may be more difficult. Murray et al. (2007) recommend several things that professionals can do to aid parents in the decision making process. Professionals should of their own child and their family dynamics, and that some treatment options may be more feasible for certain amily sufficient time to participate in all aspects of decision making (Murray et al., 2007). One of the most important roles of the professional is to research, identify, and share all possible treatment options with the family, presenting information hon estly and with neutrality (Murray et al., 2007). Many parents may not have access to peer reviewed journals and recent research, so it is up to the professional to provide this information in a way that is clear and understandable, without placing pressure on families to choose the option that best aligns with their own views. Turnbull et al. (2010) provide a knowledge to action
34 guide to help professionals who have access to peer reviewed journals to digest existing literature and to then provide informatio n about evidence based practices to parents. Families who might otherwise search the internet for possible treatments or interventions should receive information that is useful and easy to understand. In the choice of treatment, and should be for their child (Turnbull et al., 2010). Shared Decision Making A paradigm shift toward patient centered health care has occurred, mov ing away decision making model, in which the patient or parent makes a decision independently after being provided all information about potential treatment options. Increasingly, m ultiple stakeholders, including parents and professionals, have been encouraged to work together to select treatments for children with health care needs through the use of shared decision making (SDM) (Feinberg & Vacca, 2000). Shared decision making is a specific approach within the broader conceptual framework of family centered care, which is a component of the American Academy of Pediatrics Ad Hoc Task Force on (2012), shared decision whereby the patient and the clinician have access to accurate information and time to plan when there are 2 or more options for treatment and has been noted to positively impact patient satisfaction with care. The Salzburg Seminar in December 2010 consisted o f 58
35 leaders of healthcare from 18 countries that gathered to consider the role patients can and should play in their healthcare decisions (Gulland, 2011). As a result, a process of shared decision making was discussed and guidelines were published which outlined the responsibilities of clinicians, patients, and policy makers in making collaborative health care decisions. Clinicians are called to recognize their ethical responsibility to share accurate information about treatments options, including uncert ainties, benefits, and potential harms of treatment (Gulland, 2011). They are also encouraged to stimulate a two way flow of information, to consider the personal preferences of ds, and allow sufficient time for the patient or family to consider a decision. Moreover, the Salzburg Seminar called for patients to advocate for their own needs and concerns, recognize that they are equal participants in their healthcare, and seek high quality health information. Policy makers were encouraged to adopt policies that encourage shared decision making in order to stimulate the movement toward patient centered care. Participants in the Salzburg Seminar indicated that patients may continue to find it question health care professionals, may have a limited understanding about health and its determinants, and do not know where to find information that is clear, trustworthy, To date, there is a body of research on shared decision making when selecting treatments for children with Attention Deficit Hyperactivity Disorder (ADHD) (Jackson, Cheater, & Reid, 2008; Aust voll Dahlgren & Helseth, 2010;), with minimal research on shared decision making when choosing treatments for children with ASD (Golnik,
36 Macca bee, Ryaboy, Nadia, Wey, & Gaillard, 2012). T here is some research that making regarding health decisions. Parents often report little participation in decision making, feeling overwhelmed by the amount of information ava ilable and lacking confidence in understanding and evaluating information about options (Austvoll Dahlgren & Helseth, 2010). Overall, parents indicated several preferences when they are involved in making decisions. First, parents desire information that i s up to date, consistent, and evidence based that is tailored to their reading level (Jackson et al., 2008). Parents often want information that is presented in multiple ways (e.g. dvds, brochures, face to face discussions), from different sources (e.g. f amily, friends, health professionals), and want to be given time to process information before they have a discussion about treatments (Jackson et al., 2008). In the aforementioned studies, parents also indicated a desire to have some control over the proc ess rather than feeling underestimated by health professionals. It is important to recognize that they hared decision making in choosing treatments for their child with Attention Deficit Hyperactivity Disorder (ADHD), providing deeper insight into the process. Parents and pediatricians conceptualized shared decision making (SDM) differently. Parents saw the mselves as equal contributors in SDM, bringing their own insight about the child and family emphasized the importance of wanting to know all the treatment options, rather than a pediatrician pushing medication as the primary treatment. On the other hand, clinicians
37 viewed shared decision making as a way to get parents to comply with their personal recommendations for treatment (Fiks et al., 2010). This is problematic, because it may turn parents away from shared decision making and toward information seeking from other less credible sources. Parents use practical limitations to help them limit treatment options, considering insurance coverage, copays, and time for appointments and treatment implementation before considering treatment effectiveness (Fiks et al., 2010). As a result, pediatricians presented medication as a treatment before behavior therapy because they knew that there was limited coverage for quality behavior therapy and knew that medication was more accessible for parents. Fiks, Localio, Alessandrini, Asch, & Guevara (2010) and Gravel, Legare, & Graham (2006) identified barriers to SDM. First, children with behavioral impairments or poorer general health were less li kely to experience SDM (Fiks et al., 2010). Of note, children with autism often have associated behavioral impairments or complex health care needs and may be similarly less likely to experience SDM. Moreover, barriers to SDM include lack of time (Gravel, Legare, & Graham, 2006), and potential anxiety that patients may feel when informed of all health care needs (Dawes & Davison, 1994). One study, Golnik, Macca bee Ryaboy, Nadia, Wey, & Gaillard (2012), assessed the extent to which parents of children with ASD report that they are engaged in shared decision making. More specifically, they looked at the association between shared decision making and satisfaction of care, as well as assistance navigating the multitude of treatment options. Parents of children with ASD ages three to eighteen were surveyed (N=128). The instrument administered to parents included a Likert scale of agreement ranging from 1(never) to 7 (always) and asked parents whether health care
38 staff provided them with more than one treatment o ption, talked with parents about reasons for or against each choice, gave parents sufficient information about each were also asked to rate their overall quality of healt h care that their child has received. overall health care when they reported being involved in shared decision making. Similarly, parents reporting higher levels of SDM were also significantly more likely to report receiving more guidance regarding treatment options. While the positive association between SDM and satisfaction with healthcare was suggested, it remains unclear how often parents reported engaging in SDM or what aspects of the process contributed to their satisfaction. Golnik et al. (2012) emphasized the need for additional research on the potential of SDM to improve comprehensive, coordinated, and consistent primary care for children with ASD. Paren tal Causal Beliefs and Treatment Choices for ASD beliefs about autism, which may influence their subsequent treatment decisions. Hebert and Koulouglioti (2010) conducted a revie w of the literature from 1995 through 2009 They reviewed all articles published in English in peer reviewed journals, including quantitative, qualitative, mixed metho ds and case study methodology. A total of 13 articles were reviewed. Of those studies, seven articles measured the outcome of & Koulouglioti, 2010).
39 Although the ca use of autism is not currently known, parents attribute the cause of autism to many different sources including birth trauma, childhood illness, vaccines, factors, and p measured outcomes of parental beliefs, two studies focused on the resulting feelings of guilt or stigma (Gray, 1995; Mickelson, Wroble, & Helgeson, 1999). Gray (1995) found that parent psychological explanations reported strong feelings of guilt. Mickelson et al. (1999) less perceived stigma and a decrease in depression over time. Although these two studies were informative regarding parental feelings of guilt or stigma, they did not of act ions. Two studies noted that mothers who attributed autism to vaccinations decided to withhold future immunizations for their child (Dale, Jahoda, & Knott, 2006; Harrington, Rosen & Garnecho, 2006). Mercer, Creighton, Holden, & Lewis (2006) determined that parents who attributed autism largely to genetic factors considered the reproductive risks of having children and if they already had a child with autism, often placed blame on other family members that displayed symptoms of ASD. Similarly, Selkirk, Veach , Lian, Schimmenti, & LeRoy (2009) found that a substantial percentage of parents indicated that the genetic risk of having another child with autism greatly affected their decision to have more children. Furthermore, Harrington, Patrick, Edwards, and Bran d (2006) surveyed 62 parents of children with autism, noting their causal beliefs and treatment choices, among other things. Parents attributed causes
40 largely to immunizations, genetic predisposition, and environmental exposure to the mother or child (Harr ington et al., 2006). Parents who believed there was a specific cause were asked to note how that changed their attitudes about routine healthcare. Parents noted they would delay or refuse vaccines, increase the use of complementary and alternative medicin e (CAM), use more specialists for treating their child, and have since decreased their trust in traditional medicine (Harrington et al., 2006). However, specific links between causal beliefs and their changes in attitudes or actions were not noted in the s tudy. While studies have explored causal beliefs of autism and some of information about the parental causal beliefs and their direct link to treatment choices for their chi ld with ASD. Since the review of the literature by Hebert and Koulouglioti (2010), several studies have expanded the literature by more directly assessing how parental causal beliefs of autism influence information seeking activities and treatment choice for their children (Anbar et al., 2010; Dardennes et al., 2011; Shyu et al., 2010). An additional treatments for autism, contributing information about why parents may make certain treatment selections (Green, 2007). Anbar et al. (2010) noted that little information exists about why parents make decisions regarding treatment choices for their children with autism. As a result, they used a cross sectional design to understand the role of parental illness perceptions in choosing treatments. Eighty nine parents of children with an ASD were asked to complete a modified version of the Revised Illness Perception Questionnaire (IPQ RA)
41 and answer questions about information seeking a ctivities and use of treatments. Parents received a questionnaire addressing socio demographics, their personal means of information seeking (e.g. friends, training, conferences) and a short list of treatments in which they were asked to indicate those tha t they were using for their child. that the parents who had beliefs in the seriousness of the disorder were more likely to use educative treatments, specifically behavior the rapy, social skills therapy, the Treatment and Education of Autistic and related Communication Handicapped Children (TEACCH) method, or the Picture Exchange Communication System (PECS) (Anbar et al., 2010). Higher beliefs in personal control significantly reduced the odds that parents used metabolic treatments, diets, supplements, and drugs (Anbar et al., 2010). In contrast, parents who attributed autism to hereditary causes were more likely to use metabolic treatments, and especially vitamin supplements fo r their child (Anbar et al., was that men were more likely to utilize behavior therapy compared to women (Anbar et al., 2010). Regarding information seeking behaviors, parents with a greater sense of control were more likely to talk to other parents of children with autism, other psychologists, and seek information in books (Anbar et al., 2010). On the other hand, parents who somehow blamed themselves for causing their other parents of children with autism and to attend conferences (Anbar et al., 2010). As they became older, parents were more likely to seek information from educators and psychologists about treatments. There was no statistically significant difference between
42 the level of education parents received and the information sources they used when selecting treatments (Anbar et al., 2010). Finally, the only statistically significant gender difference in information seek ing behaviors was that men were less likely to attend training programs compared to women when learning about treatment options (Anbar et al., 2010). Anbar et al. (2010) provided insight into the relationship between parental beliefs and treatment choice, seeking behaviors. However, there were a few limitations of the study. First, statistical power in analysis was limited respondents were well edu financially, which may impact their treatment selection and information seeking activities. Finally, this study was conducted in France, and may not reflect the same outcomes if it were conducted in the United States, considering treatment availability or healthcare systems may differ by region. Dardennes et al. (2011) conducted a secondary analysis of the data collected from Anbar et al. (2010), specifically looking for associations between causal beliefs and treatment choices. In addition to the previous data collected, the authors also administered the Lay Beliefs about Autism Questionnaire (LBA Q; Furnham & Buck, eories related to the cause of autism, including autism as a result of cold parenting, genetic influence, brain abnormalities, and vaccinations. Although vaccinations were once suggested to be linked to autism, it was discredited by several research studie s conducted in the United States (Centers for Disease Control & Prevention, 2012).
43 Seventy eight questionnaires of parents were analyzed. The results indicated five p arents who believed that autism may be caused by early traumatic experiences were less likely to use behavior therapy or the Picture Exchange Communication System (PECS) (Dardennes et al., 2010). Secondly, higher beliefs in illness during pregnancy as the cause of autism increased the likelihood that parents used medication to treat their child. These illnesses included infection or the use of drugs during pregnancy. The use of detoxification treatments, special diets, and vitamins were linked to stronger c ausal beliefs related to food allergies (Dardennes et al., 2010). This finding is not surprising considering food allergies and gluten free diets have been more publicized in the autism community. Vitamins were less likely to be used if parents believed br ain abnormalities were the cause of autism (Dardennes et al., 2010). Overall, treatment authors also commented that the results of the study reflected a shockingly high use of non conventional treatments, despite a lack of efficacy for treatments and the fact that primary evidence based interventions are recommended widely by parent associations in France. Once again, this study is limited by its minimal inclusion of reporti ng fathers in the sample and its application of findings to the United States. Future research may making about treatment selection through interviews and conversations with parents, adding to the c ollection of survey results. Qualitative research methods can provide more intricate details of a phenomenon that are difficult to convey strictly through quantitative methods and
44 analysis (Strauss & Cor bin, 1990). To better understand treatment choices, there are and treatment experience s for their children with ASD (Green, 2007; Shyu et al., 2010). As previously mentioned, Green et al. (2006) reported the types of treatments parents of children with autism had selected in the past or were currently using for their child. The treatments m ost frequently utilized by parents were applied behavior analysis, sensory integration, and a combination of Vitamin B6 and Magnesium, a type of megavitamin therapy (Green et al., 2006). Green et al. (2006) recognized the need for additional research to un derstand the decision making processes that parents use when they are selecting treatments for their children with autism. As a result, Green (2007) interviewed 18 of the parents included in the previous study about their experiences with the three most fr equently used autism treatments. Interviews were conducted over the phone and responses were typed into excel spreadsheets during the interview for later coding and analysis. Green (2007) asked parents about their information sources, providers of treatmen ts, difficulty of treatment administration, expectations for treatments, and their experiences with the three most utilized treatments. Results indicated that of the 18 parents, 13 had used Applied Behavior Analysis, 15 had used Sensory Integration, and 14 had used Vitamin B6 paired with Magnesium. Regarding sources of information, other parents and the internet were cited as the most common sources of information (Green, 2007). Half of the parents who were using sensory integration therapy had found out about it from an occupational therapist,
45 rather than conferences, journals, teachers, or medical practitioners . Regarding applied behavior analysis, one third of the parents received their information about ABA from other parents, while the rest obtained information from reading a book (Green, 2007). As for the Vitamin B6 Magnesium treatment, parents had received information mainly from clinics, and some from the internet, newsletters, and other parents. Green (2007) noted that parents had used treatments for as short as 2 weeks to as long as 12 years, with parents implementing ABA over 20 hours per week on average and between four and 15 hours a week for sensory integration therapy (Green, 2007). Parents more often noted that ABA was more difficult to administer, while parents were more likely to note that sensory integration was easy to administer. Green (2007) co ncluded that parents used sources such as parent testimonials and internet to obtain most of their information, but it was unclear if information is based on existing empirical evidence. In addition, it was unclear whether or not parents evaluate the scien tific validity of the information obtained from these sources. Green (2007) suggested that parents may assume that the information they obtain from professionals is evidence based. In addition, the source of the information may influence the duration of th e treatment and the perceived outcomes and expectations that the parent has. understand information sources, ease of treatment administration, and duration of treatment use, there a re several limitations to the study. First, the study only assessed that are available to families of children with ASD. Other limitations to the study include that parti cipants were selected from a highly educated and motivated sample, including
46 parents who were more committed to participating in the phone interviews. In addition, the administration of the interview over the phone may have contributed to a loss of persona l connection with parents and less openness about their experiences. Lastly, although the study does not specifically indicate the method of analysis, it seems that the author used more categorization and quantitative methods of analysis, rather than deepe explanatory models in selecting treatments for their children with autism. In depth interviews were conduct ed with 13 parents of children with autism from a medical center in Taiwan. Parents were asked to describe the process of diagnosis, their feelings after diagnosis, their beliefs about the causes and prognosis of autism, the treatments their child was rece previous treatment use and why they may have terminated treatments (Shyu et al., 2010). Parents of children with autism between the ages of three and seven were included in the study a nd the majority of parents had at least a college education. Data was collected through semi structured face to face interviews that ranged from 1 to 3 hours and were taped for further analysis. Depending on the preference of families, interviews were cond choosing. Data were analyzed from verbatim transcripts that were transcribed from the tape recorded interviews. The authors used a grounded theory approach to explore of autism etiology and the corresponding interventions that parents chose. Initial categories and possible relationships were developed using microanalysis, or line by line analysis (Strauss & Corbin, 1998). In addition, a constant
47 comparison method was u sed, comparing incident with incident and incident with concept until categories were developed. Relationships between concepts were identified by theoretical coding. Rigor of the study was enhanced through credibility, transferability, dependability, and confirmability (member checking and an audit trail) (Shyu et al., 2010). Shyu et al. (2010) found that five categories emerged: 1) time and mode of onset of symptoms, 2) diagnosis and causes of autism, 3) the impact of autism on family dynamics, 4) treatme nt strategies and help seeking behaviors, and 5) factors influencing their treatment choice. age three, with most symptoms appearing between 18 and 24 months of age. The most f requently reported symptoms that parents noted were speech delays, a lack of eye contact, a lack of interest/responses to the environment, poor social interactions, and obsessive or fixed behaviors. The main reason that parents sought professional help for their child was due to a lack of or delay in speech (Shyu et al., 2010). Parents reported the process of diagnosis to be difficult and expressed concern that diagnoses vary from one doctor to another. Some parents continued to question if their child r eally had autism, or another disorder or problem. When asked about their causal beliefs related to autism, parents reported multiple causes including biological reasons (e.g. genetic factors, brain damage during pregnancy, unknown etiology), deficiencies i n nutrients (e.g. metabolic abnormalities, food allergies), and supernatural explanations for the disorder (Shyu et al., 2010). In fact, 11 out of the 13 parents sought supernatural explanations for the disorder. This may have been a result of the religiou s
48 affiliations of the majority of the families, including affiliations in Buddhism (n=5), Taoism (n=3), and folk beliefs (n=3). As a result of their belief in supernatural explanations for the disorder, many parents went to fortune tellers to determine why their children had autism. Parents noted that there were several relationships that were impacted by having a child with autism in their family. Parents noted the child themselves were affected through their delays or deficits in speech, self care, socia l interactions, transitions, and the presence of tantrums. The parents felt an economic burden of treatment and care for the child, and noted feeling tired, depressed, and exhausted. Siblings received less time and energy from parents as a result of the co nstant supervision and care necessary for the child with autism. Most relevant to the topic at hand, parents reported using multiple treatment strategies and all children had received treatments based on the western biomedical model (Shyu et al., 2010). Parents noted that they were exhausted from attending different treatments and reported a financial burden of the cost of treatments. The majority of the children (n=12) received occupational or speech therapy. Nine out of 13 children attended a day care t raining program for children with autism and only three children attended a standard preschool. Parents referred to the previous treatments as were using other treatment s including acupuncture, vitamin supplements, sensory integration, treatments for food allergies, and detoxification therapy. Two of the families sought supernatural treatments. The barriers to treatment included parents waiting a long time to participate in treatment programs due to limited resources in the Taiwanese
49 health care system. In addition, the authors noted that when parents shared information about alternative therapies, they often asked the interviewer to not tell their primary physician that t hey were seeking treatment outside the formal health care system (Shyu et al., 2010). although the cause of autism is unknown, they would rather try every possible treatmen t a period of time in which they would try any possible treatment, which for some parents was until the age of six, and others ten. Parents typically sought treatments consistent with their causal beliefs. For example, parents who believed food allergies were the cause of autism would try to avoid milk products and parents who believed there was a supernatural cause for autism would seek a fortune teller. The second fac tor that to decide whether or not to continue treatment use. However, parents did not note how treatment selection. Some children were irritable or had strong emotional reactions to therapy, influencing parents to discontinue treatment use. The fit of the t herapist to the child was yet another reported factor in treatment selection. Finally, accessibility and affordability of treatments were noted to be limiting factors in treatment selection. Although this information is most relevant to understanding paren making process regarding treatments, the results were largely influenced by religious beliefs of
50 Taiwan families, and specific resources in the Taiwanese health care system (Shyu et al., 2010). Conclusions This literature review has provided information that addressed the topic of making process by considering previous research in the following areas: challenges and barriers for parents of children with ASD, pediatrician perspectives, treatment availability, identification o f evidence based practices, shared decision making, causal beliefs, and other factors that influence treatment selection. Parents of children with ASD report difficulty obtaining a diagnosis, feeling dissatisfied r concerns, difficulty obtaining recommendations from professionals about treatments or resources, and a number of barriers to treatment. Pediatricians report a lack of time and reimbursement, as well as limited training and knowledge of community resource s and treatments for children with ASD. With the rising prevalence of autism, there has been an increase in available treatments and interventions for ASD. Treatments have varying degrees of evidence within the literature, and thus parents are faced with the difficult task of determining which treatments are effective for their child. There have been two major syntheses of evidence based practices: The National Standards Report published by the National Autism Center (2009) and a report by the National Pro fessional Development Center (2012). These reports defined evidence based practices in slightly different ways and categorized a handful of interventions differently, but overall, reached a high level of consensus on which treatments were evidence based pr actices. Published literature on recommended evidence based practices is available, and is often up to professionals to distribute knowledge effectively and accurately to parents. In addition, a paradigm shift
51 toward shared decision making encourages profe ssionals to sit down with parents as partners in decision making and provide unbiased and clear information regarding treatments options for children with ASD. Professionals are encouraged to present information that is up to date, evidence based, and is a vailable in multiple formats (e.g. dvd, brochures, face to face, printed information) (Jackson et al., 2008). Parents have suggested that professionals may not be taking the time to adequately approach shared decision making with parents, warranting the ne ed for more research (Austvoll Dahlgren & Helseth, 2010). Regarding parents of children with ASD, several factors have been found to play directly linked to their treatmen t choices for their child (Hebert & Koulouglioti, 2010; Dale, Jahoda, & Knott, 2006; Harrington, Rosen, & Garnecho, 2006, Harrington et al., 2006). In addition, parents have noted availability, costs of treatments, time commitments, child preference, and f it of the therapist to the family as factors influencing treatment selection (Shyu et al., 2010). Another factor that has been found to influence treatment choice is perceived outcomes of the treatments by the parents, although it is unclear if parents are systematically measuring outcomes or just reporting their overall experience with the treatment (Shyu et al., 2010). Limitations of Current Research Multiple research studies have noted the need for more information about making proce ss in choosing treatments for their children with ASD. There is no research to date that specifically addresses this topic. Two previous studies making about treatments. Green (2007) int erviewed parents about their experiences with three of the
52 most frequently utilized treatments. However, the findings were limited due to a highly educated sample and a lack of more in depth information about the process that parents go through when choosi ng one treatment over another or choosing to discontinue the use of a treatment. In addition, the interviews were conducted over the phone and only lasted one hour, which may have contributed to a loss of personal connection with parents, openness about th eir experiences, and enough time to truly specific treatments, rather than all of the treatments parents had utilized. Shyu et al. (2010) acknowledged factors influencing pare health care system. Interviews were conducted face to face and lasted for one to three hours, providing adequate time for parents to share their experiences. However, the results of Shyu et al. (2010) could be expa nded by seeking more information about how parents evaluate the effectiveness of treatments, how they decide to terminate therapies, and whether or not they engage in shared decision making. Additionally, it may be helpful to obtain suggestions from parent s about ways that professionals can support them through the process of diagnosis and treatment selection in the future. within the United States.
53 CHAPTER 3 METHOD OLOGY Purpose of the Study and Research Questions Parents of children with autism spectrum disorders are faced with numerous treatment options (Green et al., 2006). The rising prevalence of autism has spurred a number of treatment options for children with ASD, not all of which are considered evidence based practices. Researchers have attempted to differentiate practices based on scientific evidence and experimental rigor (National Autism Center, 2009; National Professional Development Center, 2012); howeve r, research has noted that the presence or absence of empirical evidence for treatments does not differentiate between the most commonly used and infrequently used treatments (Green et al., 2006). Given that autism is most effectively managed by early iden tification and evidence based intervention (Simpson, 2008), it is critical that parents are able to To date, there is limited research that has addressed the topic of how par ents treatment selection has been largely conducted through quantitative methods, employing use of surveys and questionnaires as the main form of data collection. Although results of such studies contributed information about the frequency and use of various treatments (Green et al., 2006) as well as the influences of causal beliefs on treatment selection (Mercer et al., 2006; Harrington et al., 2006; Anbar et al., 2010; Dar dennes et al., 2011), these studies were focused on narrow aspects of decision making. Many questions remained unanswered. Further information was needed in regards to how parents make decisions about treatments, how they evaluate
54 effectiveness, and how pr ofessionals can support them in their decision making process. Qualitative research methods were utilized to provide a deeper understanding making process that is difficult to convey through methods of quantitative data collection and analysis (Strauss & Corbin, 1990). In particular, qualitative research can help address process decision making, and can be used to inform theory and model development (Leech & Onwuebuzie, 2007). In this study, qual itative research was utilized in order to provide a of their initial concerns about their child until present day. Moreover, a grounded theory approach to data analysis was theoretical explanations of social processes (Charmaz, 2006). The approach allowed for parents to share their experiences. Subsequent codes and themes emerged from the comparisons across and wi thin parent interviews, which resulted in an inductively The decision making process when choosing treatments for their child with ASD. The study focused on each step within the process, including diagnosis, reaction to diagnosis, and with professionals within the decision making proce ss. In particular, the study addressed how professionals contributed to treatment decisions and whether or not they engaged in shared decision making. Parents subsequently expressed ways in which professionals can help to support them throughout the proce ss of diagnosis and treatment selection. The guiding research questions for the study were:
55 What is the decision making process that parents use when approaching the process of treatment selection for their children with ASD? What factors influence parents to select treatments and/or disregard others? What are the barriers to treatment? How do parents evaluate the effectiveness of a treatment? making process? This chapter outlines the research methodology and procedures that were used for this study. It includes information about qualitative research methods, purposeful sampling and participants, the data collection procedures, and analysis methods. This chap ter also highlights quality indicators, as well as a researcher subjectivity statement. Qualitative Research Methods Qualitative research can be especially sensitive to uncovering and understanding aspects of a phenomenon that has not yet been fully unders tood (Strauss & Corbin, 1990, p.19). The overall purpose of qualitative research is to achieve an understanding of how people make sense of their lives, make meaning of their experiences, or in this case, describe a process through their own perspectives ( Merriam, 2009). Leech and Onwuebuzie (2007) noted two positive features of qualitative data. First, qualitative data is inherently rich and holistic, which allows for a more complex understanding and analysis of information (Leech & Onwuebuzie, 2007). The current study allowed parents to provide complex details on the phenomenon of decision making, and express their thoughts, actions, beliefs, and emotions throughout the process. Secondly, qualitative expressed through first hand accounts and can be interpreted with respect to the meanings that people bring to their
56 accounts of their decision making process, the results of th e study more directly reflect qualitative methods resulted in more abundant and relevant data to address the research questions of this study. This study exhibited five char acteristics of qualitative research as defined by Merriam (2009). The criteria include: 1) understanding the phenomenon of interest from collection and analysis, 3) these da ta are analyzed inductively, and 4) the product of qualitative research provides rich descriptions of a process. This study allowed for parents to delineate the process of treatment selection through their own perspectives. The data collected included dire ct quotations and rich descriptions from participants to illustrate the development of the grounded theory. These data were then used to draw process. Description of Participants Parents of children with ASD between the ages of six and twelve were the p articipants in this study. The child of the parent participant must have been diagnosed Pervasive Developmental Disorder Not Otherwise Specified (PDD NOS) by a psychol ogist, psychiatrist, or pediatrician. At the time of the current study, the children were diagnosed using the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV). Given the age of the child, participants had several years to enga ge
57 in the process of treatment selection, as it is most common for children with ASD to be diagnosed by four years of age (Center for Disease Control and Prevention, 2014). Utilizing parents of younger children also provided a shorter period of time since diagnosis so that the decision making processes are more recent, allowing them to remember important details, reactions, and perspectives. Parents of a child with unusual comorbid disorders were not included in this study. This excludes common comorbid dis orders such as Attention Deficit Hyperactivity Disorder (ADHD) or Sensory Integration Disorder. In addition, the parent must have been the primary caregiver for tr eatments. Basic demographic information about the parent and child was obtained, and occupation. Information obtained about the child included their gender, age, r ace/ethnicity, diagnostic label on the autism spectrum and date of diagnosis. Table 3 1 provides a brief summary of parent and child demographics. A total of nine parents participated in the study, including eight mothers and one father. One set of married parents participated together in the study. All other participants were mothers who participated independent of their spouse. Parent participants ranged in age from thirty five to fifty one years old. All parent participants identified as Caucasian/Non Hi spanic and reported that they were currently married. In addition, all participants completed some secondary education, with the majority of parents reporting completion of a e pathologist, massage therapist, photographer, and social worker, as well as several
58 mothers who indicated that were currently homemakers. It is important to note that several parents indicated that they had previously given up their jobs so that they cou ld coordinate care for their child. Child demographics varied in age and diagnostic label. While the criteria for the study indicated that parents must have a child between the ages of six and twelve, several parents had multiple children diagnosed with an ASD that fell outside the age criteria. As a result the age of children described by the parents in this study, ranged from four years to twenty three years old. The age of diagnosis varied widely, with children receiving a diagnosis between the ages of 2 7 months and ten years. Annual family income was varied across participants, with most participants earning between seventy five thousand to ninety nine thousand dollars annually. Of note, Victoria reported that she received additional financial support fr om her parents to pay for treatments for her son. Parents reported having varying beliefs in the cause of autism to include: genetics, environmental factors, diet, vaccinations, spiritual causes, and neurological/physiological causes. Of note, Mary was los t to follow up for a second interview and additional information regarding her age, educational status, and annual income could not be obtained. Additionally, parents reported the types of treatments that they had previously tried or were currently pursuin g. Table 3 Parents most commonly reported trying seven treatments, with one parent reporting as low as zero treatments and another reporting up to nine treatments that had been or were currently being pur sued. Of note, several parents reported that due to financial or time limitations, they self implemented treatments at home, without pursuing implementation by a provider. The most common treatments utilized were Applied
59 Behavior Analysis, Occupational Th erapy, and Biomedical Interventions (i.e. supplements, vitamins). In contrast, the following treatments were each reported to be utilized by only one parent participant: Clay Bath, Hyperbaric Chamber Treatments, Neurofeedback, Parent Child Interaction Ther apy, Physical Therapy, Picture Exchange Communication System (PECS), and Social Stories.
60 Table 3 1 . Participant characteristics Participant Age Highest Degree Attained Occupation Number of Children Age of Child/ Children with ASD Diagnosis Age at Diagnosis Annual Family Income Belief in Cause of Autism Theresa 45 Masters Speech Language Pathologist 2 4, 9 Autistic Disorder 27 months $150,000 $199,999 Genetic; Environmental;Gluten Margaret 41 Bachelors Homemaker 2 11 Autistic Disorder 3 years $75,000 $99,999 Vaccinations; Chemical Exposure Tina 49 Bachelors Homemaker 2 12 Disorder 5 years $100,000 $149,999 Genetic Brenda and Sam 51 Bachelors Social Worker; N/A 3 8 Autistic Disorder 7 years $75,000 $99,999 Genetic; Older age of parents at conception Martha 41 Associates Photography 2 9 Disorder 6 years $75,000 $99,999 Diets; Spiritual Stephanie 39 Bachelors Massage Therapist 2 11 PDD NOS 10 years $35,000 $74,999 Genetic; Environmental Victoria 35 J.D. Homemaker 2 6 Disorder 3 years $75,000 $99,999 Genetic; Environmental Mary N/A N/A Homemaker 3 6, 7, 23 Autistic Disorder 28 months N/A Nervous System; Physiological * All parent participants reported they were Caucasian/Non Hispanic and were married.
61 Table 3 2 . Participant treatment choices Theresa Margaret Tina Brenda and Sam Martha Stephanie Victoria Mary Academic Intervention Applied Behavior Analysis** * * Biomedical Intervention Chiropractic Therapy Clay Bath Counseling Diet Hyperbaric Chamber Treatments (i.e. oxygen therapy) Massage Therapy Medication Neurofeedback Occupational Therapy * Parent Child Interaction Therapy Physical Therapy * Picture Exchange Communication System** Sensory Integration (i.e. brushing) Social Skills Group** Social Stories** Speech Therapy Total Treatments Implemented 7 3 7 0 3 6 9 7 * Parent self implemented treatment ** Evidence based treatments according to the National Autism Center and National Professional Development Center Biomedical Intervention includes: chelation, B12 injections, supplements (zinc, selenium, calcium, magnesium, dandelion root, folic acid, omega oil); Diet includes: gluten casein free diet, no dairy ; Medications include: Vivance, Adderall, Ritalin, Strattera, Zoloft
62 Data Collection P rocedu res Overview of Data Collection Approval by the Institutional Review Board (IRB) was obtained for the study. Parents were recruited from a previous study based on specific criteria and purposeful sampling by the researcher. Parents who were willing to pa rticipate were contacted, and consent was obtained for each participant through a formal document that stated their right to withdraw from the study at any time. The document also outlined the procedures involved in their participation: two to three semi structured interviews and completion of the demographic information about themselves and their child ( Appendix: Informed Consent Form). Participants were not offered compensation or incentive for participation, and there were no foreseeable negative consequences to participation in the study. Once parents provided consent for the study, the researcher call ed the parent to schedule the first semi structured interview. Parents were given the option of where they were most comfortable conducting the interview, and were asked to be unaccompanied by their children in order that they could more easily share their experiences without interruption. The parent and researcher selected a place of convenience where the parent was comfortable talking openly (home, library, coffee shop, etc.). The following sections outline specific data collection procedures, including r ecruitment of participants, purposeful sampling, semi structured interviews, and field notes. Recruitment of Participants study on the vestibular ocular reflex in children with ASD. The study was conducted at a major university in the southeastern United States and did not address delivery of
63 tr eatments or services. Parents who indicated that they were willing to be contacted about future research studies were eligible for recruitment. In the previous study, parents were recruited through flyers or word of mouth from several different sources: el ementary and middle schools in the local county school district in north central Florida, parents of patients attending therapies at the local psychology clinic in the area hospital, parents of patients attending local community treatment facilities (speec h therapy, occupational therapies, physical therapy, etc.), and parents who are enrolled in receiving services from the local Center for Autism and Related Disabilities (CARD). The previous research study had the following inclusion criteria for children w ith ASD: children were between the ages of 6 and 12, had no unusual co morbid disorders (excluding ADHD, sensory processing disorder, etc.), and no seizures, cancer, or other major medical disorders. In addition, as a requirement of the study, each child w as administered the Autism Diagnostic Observation Schedule (ADOS), Leiter International Performance Scale, Revised (Leiter R), Physical and Neurological Assessment of Subtle Signs (PANESS), and parents completed the Vineland Adaptive Behavior Scales, Socia l Communication Questionnaire (SCQ), Sensory Profile, and Repetitive Behavior Scales Revised (RBS R). The current researcher, who also interacted with the parent and their child during two visits to the previous study, had been responsible for recruiting the children in the previous study. Benefits of using this population of participants for the current research study included that the researcher had already established rapport with the parents and their child, and had also conducted assessments to ensur e the child meets criteria for an autism spectrum disorder. Parents who indicated they were interested in being contacted for future research were
64 contacted and informed about the current study. They then chose to decline or accept participation in the stu dy. Purposeful Sampling In grounded theory, sampling approaches change with the development of the research (Bryant & Charmaz, 2007). To obtain an accurate and thorough depiction of making process about treatments for their child with A SD, theoretical sampling was used. Glaser and Strauss describe this strategy as follows: Theoretical sampling is the process of data collection for genera ting theory whereby the analyst jointly collects, codes, and analyzes data and decides what data to co llect next and where to find them, in order to develop his/her ntrolled by the emerging theory (1967, p. 45). Sampling procedures did not rely on random sampling or stratification to make the sampl e representative. Rather, individuals were selected based on their expected level of insight for the developing theory. When data collection first began, convenience t o the population in this case, parents of children with ASD who noted they were interested in being contacted about future research studies. After some understanding of the phenomena reported by several participants, purposeful sampling took place. In th is step, participants were selected as indicated by the initial analysis of interviews. The interviews initially revealed the financial barriers and affordability of treatments as a significant factor in treatment selection, so participants across differen t socioeconomic statuses were targeted for data collection in order to more fully understand treatment selection processes across families with different levels of financial support. Theoretical sampling was utilized to help inform existing gaps in the eme rging theory by selecting parent participants that had valuable experiences and information to offer. Overall, the
65 process of targeted data collection evolved over time, based on concurrent data collection and analysis. Semi Structured Interviews Intervi ews were the primary source of data collection for this study. The use of semi structured interviews is one of the most widely used methods of data collection (Flick, 2009; Leech & Onwuegbuzie, 2008). Semi structured interviews allowed for more open conver sations compared to a more structured interview or questionnaire (Flick, 2009). The degree in which qualitative interviews are structured varies depending on the desired outcome of the data. Even when an interview guide is used, qualitative interviews off er the interviewer flexibility to pursue a range of topics and allow the participant to shape the content of the interview (Bogdan & Biklen, 2003). In this case, a more open conversation was preferable to a very structured initial interview, which allowed parents to share their experiences in their own words and provide descriptions of their decision making process in a more personal manner. The approach of a problem centered semi structured interview was best suited for the research questions identified for this study. A problem centered interview is comprised of a preceding short questionnaire, the use of an interview guide, and several communication strategies that gradually use more specific probing to answer questions about the problem at hand (Flick, 2009). By having parents complete a short questionnaire about their demographic information, the researcher was able to reduce the number of questions and thereby focus the interview on more essential topics surrounding dec ision making (Flick, 2009) ( Appe ndix Parent Demographic Information Form). An interview guide was used to support the narrative shared by the parent and allowed for redirection of the interview when conversation became unproductive or was
66 no longer focused on t he decision making proce ss ( Appendix Interview Protocol). Regarding communication strategies, it was important to begin with a conversational entry, beginning with a more general discussion and slowly leading to more specific prompting and questioning (Flick, 2009). In this stu dy, the conversational entry included from these questions helped to inform subsequent questions more directly related to the selection of treatments for their child. Several strategies were utilized in this study to encourage the participants to talk fre ely and openly about their points of view and produce rich data filled with personal examples and their perspectives (Bogdan & Biklen, 2003). The interviewer verbal body l anguage, and clarifying questions and statements. The interviewer asked for specific examples about points that were made (Bogdan & Biklen, 2003). For example, when interviewing parents about their initial efforts in decision making surrounding treatments , the interviewer asked parents to think back to the time in which their child was initially diagnosed and to try and relive their thought processes at the time. Parents were encouraged to elaborate and provide examples to the best of their ability. The in terviewer ensured understanding through summarizing, feedback, and directing questions to the participant to better clarify his or her answers. By being aware of good interviewing skills, the dialogue between the interviewer and the parents provided rich s
67 making process. All interviews were audio recorded and transcribed by the researcher to ensure accuracy of the information provided, as well as to ensure proper understanding of the conte xt in which information was shared. The general timeline for data collection included first and second interviews for most participants, with third interviews for several parent participants near the conclusion of data collection and during the final stag es of grounded theory development. Data collection and analysis was an iterative process, occurring simultaneously throughout the study. An interview with parent participant A took place, followed by immediate transcription of data and a first phase of ana lysis, as discussed in the data analysis section below. Approximately 2 3 weeks later, the second interview with the parent participant A was conducted, following up on previous data and gaps in data collection. Parent participant B completed an initial interview at the same time data analysis occurred for participant A. Transcription and data analysis occurred immediately after the interview, and parent participant B was interviewed a second time approximately 2 3 weeks following their first interview. This simultaneous procedure of data collection and analysis occurred until all participants completed the interview process. Through simultaneously analyzing and collecting data, data collection was able to be refined by focusing on aspects and themes tha t began to emerge. After data collection and analysis occurred for most or all of the participants, a grounded theory began to emerge. Nine parents participated in the first set of semi structured interviews, ranging in duration between 60 120 minutes. E ach parent participated individually, with the exception of one couple, who were interviewed together about their decision making
68 process. The purpose of the first interview was to establish rapport, learn about the child, the process of diagnosis, and beg in to understand the factors involved in the causal beliefs about autism, choice of treatments, and key sources of information. After the initial interviews were conducted, transcribed, and analyzed, follow up questions were developed for the second interview to reflect general themes discussed by each participant. As data was collec ted, it was continuously analyzed across experiences, which allowed for the identification of emerging themes and a better understanding of factors that have contri buted to different pr ocesses of decision making ( Data Analysis in subsequent section). In addition, field notes kept by the researcher were used to begin development of a theory about parent making process ( Field Notes). Second interviews were scheduled and conducted 2 3 weeks following transcription and an initial analysis of the first interview data. The goal of the second interview was two fold: to clarify and gain a deeper understanding of information presented in the initial interview and to ensure validity of interpretation of the data collected, which provided the interviewer a chance to obtain feedback from the participant regarding the accuracy of interpretations from the first interview. This allowed for communicative validation of da ta through member checks, ensuring that the responses and experiences (Flick, 2009). During second interviews, parents were
69 asked more specific questions about their d ecision making process. Topics addressed in the second interview included: how parents evaluate the effectiveness of a treatment, their decisions to change from one treatment to another, service barriers that may have influenced their treatment options, th eir experiences with professionals in shared decision making, and their specific recommendations for how professionals can support them through the process of diagnosis and treatment selection. Questions became more specific to aspects of treatment selecti on as the interview unfolded ( Appendix A). Six parent participants completed a second interview, lasting 60 120 minutes in duration. One set of parents, Brenda and Sam, reported that they had not pursued any treatments for their son, and therefore, did not have additional information to contribute to treatment selection or evaluation of effectiveness. Another participant, Mary, declined to participate in the second interview. Three parents were selected for a third interview, lasting in duration betwee n 60 90 minutes. The purpose of the third interview was to further explore areas in which the selected participant had great insight, as well as to validate the interpretations of the interviewer through member checking. At this point in data collection an d analysis, all data from first and second interviews with participants was complete and analyzed and experiences of decision making. During the third interview, parents were prese nted with the framework of the grounded theory that developed throughout data collection in order to validate the findings. Member checks occurred with parents and they were asked to confirm that the developed theory was an accurate reflection of their dec ision making processes or identify how their experiences deviated from the grounded theory. For
70 example, during a third interview, parents confirmed that they used a cost benefit analysis when selecting treatments for their children, which was a major them e that arose during all parent interviews. The process of member checks will be further discussed with the quality indicators section of this chapter. Field N otes Recording of field notes, or memo writing, is a critical step related to data collection and analysis (Charmaz, 2006). Field notes were used to record the reflections, ideas, and patterns that emerged during data collection (Bogdan & Biklen, 2003). Following parti cipant interviews, the researcher recorded field notes and reflected on the dialogue that occurred with parent participants. This is important for a number of reasons. First, field notes can served as a supplement to audio recorded interviews, and provided a rich picture of the meaning and context of the interviews that took place. Although audio recording helped capture the context of a conversation, but did not capture the sights, smells, impressions, and other nonverbal behaviors of the participants. Fi eld notes provided additional information that were helpful during analysis and formulation of the grounded theory. Bodgan and Biklen (2003) describe the opportunity for field notes to become A personal log that helps the researcher to keep track of the de velopment of the project, to visualize how the research plan has been affected by the data collected, and to remain aware of how he or she h as been influenced by the data. (pg.111). Field notes were important tools during the recurrent process of data anal ysis. For this study, field notes were recorded following many first and second interviews and included important descriptions from the interviews themselves, as well as the
71 collection and analysis. Secondly, the researcher provided various representations of throughout the process. For example, after the completion of a second interview with a helped to conceptualize steps in her process of treatment selection. Finally, the hout the decision making process as it emerged throughout the interviews. This allowed the interviewer to reference the decision making process in a more visual and concrete manner, in order that follow up interviews could target gaps in the formulation of a grounded theory. Data Analysis Grounded Theory Regarding more specific methods of qualitative research, a grounded theory inductively derived grounded theory about a phenomeno 24). While previous research has addressed isolated aspects of decision making, a grounded theory approach allowed for consideration of the process as a whole. The purpose of grounded theory is to ultimately develop a theory centered in reality through recurrent and simultaneous processes of data collection and analysis (Strauss & Corbin, 1990). There are several procedures that are necessary for the use of grounded theory. Data should be gathered and analyzed, and the constru ction of the theory should be formed concurrently (Bryant & Charmaz, 2007; Weiner, 2007). By moving back and forth between data and analysis, the data collection process becomes more
72 focused over time. Coding of the data begins when the first interview is conducted, and field notes and memo writing are used as well (Bryant & Charmaz, 2007). In addition, sampling is purposeful, searching for patterns and variations across the accounts of different parent participants. As information is analyzed and the theor y is formed, sampling becomes more purposeful to target demographic variables or experiences as data collection proceeds. Another aspect of grounded theory is that data collection continues until theoretical saturation occurs, meaning there are no longer gaps in the emerging theory and there is no longer a need for more data (Bryant & Charmaz, 2007). In this study, the final theory resulted in a visual representation and detailed description making pro cess of choosing treatments for their child with ASD, to potentially inform how professionals can assist parents in the decision making process in the future. Constant Comparative Analysis Constant comparative analysis is one of the most frequently used m ethods of qualitative data analysis and was used for this study (Leech & Onwuegbuzie, 2007). Glaser and Strauss (1967), created constant comparative analysis as a way to identify a set of themes and generate theory from data. There are three main stages of analysis: open coding, axial coding, and selective coding (Leech & Onwuegbuzie, 2007). During the first stage, the researcher used line by line or incident by incident coding to chunk data based on key issues and actions that arise during parent decision making. In this study, initial coding occurred immediately after the first interview and sought to understand the basic processes and concepts of the phenomenon of parent decision making. During the procedure of initial coding, the researcher engaged in s everal processes. Initial coding was grounded in the data, rather than trying to apply previous
73 theoretical orientations to the data (Bryant & Charmaz, 2007). In the first phase of coding, it was important to code actions that were described, rather than beginning to make conceptual leaps and form theories before enough analysis had taken place. This allowed the researcher to stick to the perspective and experiences of the participants, rather than jumping to conclusions in the data. It was also important for codes to be provisional, as the researcher needed to remain open to different directions of analysis and create codes that fit the data (Charmaz, 2006). Speed and spontaneity were used in coding to spark new ideas and take advantage of a fresh view of the data (Charmaz, 2006). In addition, codes remained simple and precise. Comparisons were made within the same interviews, across interviews with the same participant, and across multiple participant interviews (Charmaz, 2006). It is also important to rec ognize that the that the participants had not thought of previously (r esearcher reflex ivity statement in quality indicator section). During the second stage of axial coding, coding became more focused. Codes became more directed and conceptual than line by line or incident by incident coding (Glaser & Strauss, 1978). Axial coding was used to synthesize and explain larger pieces of data. The most significant or frequent codes from the first analysis were used to form from pursuing treatments (i.e. time, mone y) began to be conceptualized under the larger about which codes made the most sense to categorize data clearly and completely
74 (Charmaz, 2006). After focused coding occurred, theoretical coding was used to identify possible relationships between categories (Charmaz, 2006). The final stage of selective coding allows the researcher to select the most salient and frequent categories to be used in theory development. This occurred after the completion of most interviews. In addition, the most salient themes were further explored in second and third interviews conducted with parents. During these interviews, member checks were used to validate the themes that emerged through analysis. For example, the overwhelming expression of time and money as barriers to treatment, coupled with emerged over time and data sa turation was reached, concluding data collection. As a final result of data collection and analysis, the researcher developed a grounded theory. Through constant comparative analysis, the researcher was able to construct an abstract theoretical explanati selecting treatments for their child with ASD (Charmaz, 2006). The theory is perspectives, as well as the course of actions that we re commonly taken by parents when choosing treatments. This included the process of diagnosis, reactions to diagnosis, sources of information, barriers to service delivery, components of treatment selection, how parents evaluated treatment effectiveness, a nd how they engaged with health care professionals throughout the process (i.e. shared decision making). It is important to note that the final grounded theory is not intended to apply to all paren ts of
75 children with ASD, but is representative of the share d experiences of the current making process. Quality Indicators Since a qualitative approach to research is inherently different than the more traditional quantitative approach to research, a different set of criteria are necessary to assess qualitative research. Merriam (2009), Bogdan and Biklen (2003), and Lincoln and Guba (1985) addressed issues of credibility, dependability, transferability and objectivity in qualitative research. The recommendations made by these authors were u sed to guide practices in the current study to ensure the use of rigorous methodology. Credibility In qualitative research, researchers view credibility, or internal validity, as the fit and accuracy of recorded data with the actual events and conversatio ns that occurred in reality are being studied, so it is important to ensure that the findings are credible. An important criterion includes ensuring that the participa recorded accurately and are not oversimplified or misinterpreted. This study sought to enhance credibility through several practices. First, member checking took place to solicit feedback about emerging themes/findings fro m parent participants. The use of multiple interviews with the same participant allowed for member checking. Giving the researcher the opportunity to ask the participant about the same topics in a follow up interview allowed the researcher to reconfirm the accuracy and consistency of the data (Lewis, 2009). In addition, a third interview conducted with several participants allowed the researcher to present the developed grounded theory to the participants to ensure the final theory accurately and
76 thoroughly reflected their decision making experiences. Participants were asked to recognize their experiences within the final grounded theory, or suggest fine tuning the theory to better capture their perspectives (Merriam, 2009). Secondly, prolonged engagement with the participants enhanced the credibility of making experiences, spending a longer duration of time with each participant allows for more comprehensive findings (Me rriam, 2009). Prolonged engagement with the participants through two to three in depth interviews, each lasting one to two hours processes. In addition, prolonged engageme nt allowed the opportunity to build trust and rapport with parent participants. Peer debriefing was also used to establish credibility. A fresh perspective of the the data (Lincoln & Guba, 2009). This took take place during discussions with a peer/colleague familiar with qualitative research throughout data collection and analysis. The individuals who were consulted as peer debriefers were credentialed professionals who were had an advanced graduate education and experience with qualitative research. Discussions of emerging themes and assumptions of the researcher, coupled with presentation of transcriptions when necessary, were discussed with colleagues to assess whethe r the conclusions being drawn were plausible based on the data (Merriam, 2009). assumptions, experiences, and worldview as related to the study at hand (Merriam,
77 2009). Within qualitative research, the researcher is the instrument of data collection and it is critical to allow the reader to better understand how the researcher may have arrived at the final interpretations of the data. A statement regarding these perspecti ves Dependability Reliability, in a traditional sense, refers to the extent to which research findings can be replicated in research. However, in qualitative resea rch, there is no assumption that there is a single reality or that studying the same topic should yield the same results 0). Lincoln and Guba (1985) conceptualize reliability in qualitative research as dependability, referring to the extent to which findings are consistent with the data collected, not that they are able to be replicated. Strategies to enhance dependability were peer debriefing, researcher reflexivity, and an audit trail. The first two were previously discussed under credibility. An audit trail is an additional way to enhance dependability of results. The audit trail can include raw data in all forms; the d ata reduction and analysis products including field notes, summaries, quantitative summaries (i.e. number of codes that applied to each parent), and theoretical notes. It serves as documentation that details the processes in which the researcher engaged in to arrive at the findings of the study (Merriam, 2009). All interviews were coded through the use of Nvivo, which allowed for documentation of all codes and categories that were identified in the analysis process. Furthermore, qualitative researchers keep reflective field notes to help describe their processes, as well as increase awareness of their own biases. In this study, the researcher kept a reflective journal of thoughts, feelings, opinions, hunches,
78 assumptions and biases throughout the duration of the study. One example in which the researcher recorded assumptions and biases following an interview was after the completion of an interview with parent participants Barbara and Sam, who had not pursued any treatments for their child. Following the init ial interview, the researcher reflected on her initial assumption that all parents were pursuing treatments or wanted to pursue treatments for their child with ASD: After completing my first interview with participant parents Barbara and Sam, I am really at a loss for understanding. The parents, both age fifty one, noted that they were not and had not tried any therapies for their child. Their child was diagnosed with autistic disorder one year ago, and they home for adults with disabilities, so she was often around people with more functi realized their son wants help making friends, so they believe social skills may help him. This interview left me to wonder why they were not pursuing services was it for financial reasons ? Was it because they believed the cause of autism was from being older parents, and therefore, not as othe interview really challenged my assumptions and expectations, as I never expected parents to not have tried any tre atments whatsoever. By recording instances in which the researcher was reflecting, acknowledging and challenging assumptions, an audit trail was produced throughout the process of data collection and analysis. Transferability Transferability, or external validity, seeks to address the extent to which the findings of a study can be applied to other situations (Merriam, 2009). Generalizability in the traditional quantitative sense cannot occur in qualitative research. However, Lincoln and Guba (1985) sugges
79 original investigator than with the person seeking to make an application sought, but the appliers ca to provide rich and descriptive data that allows the reader to determine whether or not the findings apply to their individual circumstances. In this study, field notes, demographic information, a nd specific quotes of participants will provide an opportunity for the researcher to provide rich, thick descriptions of the settings, participants in the study, and adequate evidence and quotes supporting the findings in the data. In this way, a reader ca n understand the context in which the findings were developed, and determine if the outcomes of the study apply to their own circumstances. In qualitative research, the researcher is considered the instrument of data collecti values and beliefs which may impact data collection and analysis (Bogdan & Biklen, inevitable that subjectivity will be present and needs to be identified and discussed within the context of the research study (Bogdan & Biklen, 2003). Qualitative researchers assert that no research can be entirely objective and by recognizing the personal lens, the researcher can become more conscious of how their own perspectives and experiences impact the research. Within the context of the and perspectives t decision making processes in choosing services for their children with ASD.
80 As the researcher conducting the current study, it is important to disclose my own personal experiences, views, an d assumptions. I am a Caucasian woman currently enrolled in a School Psychology doctoral program in Florida. As a young child, I was always passionate about children with disabilities and the way their disabilities impacted their lives. I was especially fa scinated by children with communication/language deficits, including children who are Deaf or hard of hearing and children with autism spectrum disorders. As I entered college, I pursued a degree in Psychology and minor in education. Through my coursework and volunteer experiences, I was afforded the opportunity to work with children with severe and multiple disabilities, including children with ASD in local schools. I served as a volunteer and therapist in an applied behavior analysis lab for children with severe and multiple disabilities, and realized the impact that applied behavior analysis could have on improving the functioning and social interactions of children with even the most profound impairments. These experiences influenced my decision to pursu e a doctoral degree in School Psychology, as I wanted to pursue training in the best practices of assessment and intervention for children with disabilities in order to improve their educational, social, and adaptive functioning in the future. Throughout t he four years in the program, I worked in school and clinical settings, providing assessment and intervention services to children, especially focused on serving children with autism spectrum disorders. Despite learning about the best practices for interve ntions and treatments for children with ASD in course work, my experiences with children and families revealed that children with ASD were receiving an array of treatments that were unsupported by research in the field. Through professional and personal in teractions, parents of children with ASD continuously
81 expressed to me their frustrations receiving diagnoses, as well as obtaining information about treatments and services for their child. As a researcher in a lab studying children with autism, I would of ten complete brief phone screeners over the phone with parents I had never met before. During the brief screener, parents would often begin to ask my opinion about different treatments for autism and whether or not they should pursue particular services fo r their child. It was startling to think parents were willing to ask the treatment selection for their child. I realized that if parents are readily asking for advice from a s tranger, there may be a need to understand their decision making process so that professionals can aid parents in making well informed decisions. This realization ultimately leading to the topic of the current study.
82 CHAPTER 4 RESULTS In this chapter, grounded theory will be defined and the theory that emerged during this investigation will be presented the experiences and decision making process of parents when selecting treatments for their child with an autism spectrum disorder (ASD). The chapter will conclude with the rationale for the selection of two parent experiences through which the grounded theory will be illustrated in Chapter Five. Defining a Grounded Theory Strauss and Corbin (1990) defined a grounded theory as a theory that is, inductively derived from the study of the phenomenon it represents. That is, it is discovered, developed, and provisionally tested through systematic data collection and ana lysis of data pertaining to the phenomenon. Therefore, data collection, analysis, and theory stand in reciprocal relationship with each other. One does not begin with a theory, and then prove it. Rather, one begins with an area of study and what is relevan t to that area is allowed to emerge (p.23). Grounded theory research begins with a flexible research question that may arise out of in which there is a lack of theoreti cal models, theories, or explanations (Flick, 2009). Upon selecting a specific research question, participants with insight into the phenomenon can be identified, observed, and interviewed to gain an understanding of their experiences and perceptions. Once the researcher has established rapport with the participants, a cyclical process of data collection, coding, analysis, and theoretical development can occur. Simultaneous data collection and analysis is used to identify codes (i.e. time, money), categorie s (i.e. barriers), and theoretical relationships among the categories (i.e. cost benefit analysis) that begin to formulate a theory that is
83 comparative analysis approach with in and across participant interviews, overlapping experiences of multiple participants can emerge to contribute to a grounded theory of the phenomenon. Through multiple interviews and repeated data collection, the theoretical links between categories can b e strengthened and tested across subsequent interviews and data collection. Additionally, by continuing the process of data collection and analysis simultaneously, the researcher can verify the validity of the categories and theoretical relationships that are developed over time by directly asking participants about the accuracy of their interpretations (i.e. the reader is referred to Chapter Three for a detailed description of the procedures implemented in this study). The grounded change, regress, or stay the same over time (Strauss & Corbin, 1990). Furthermore, analysis should offer interpretations that are applicable to everyday experiences and contribute knowledge that can be used to make improvements in the process or spark further research about aspects of the phenomenon (Charmaz, 2006). The Grounded Theory Through their experiences and perceptions, parents shared their insight into the process of diagnosis and treatmen t selection for their child with ASD. While the initial focus of the study was treatment selection, it quickly became apparent that the parents considered the process of diagnosis as a critical step in the process of accessing treatments, and therefore, th is will also be examined. Overall, parents discussed their experiences throughout the process of diagnosis and treatment selection, interactions with professionals, and perceptions about the care they received. Included in their descriptions were: the deta ils of what occurred in each interaction and step of the
84 process; how they felt during and following each interaction; what steps they took following professional opinions (i.e. diagnosis or no diagnosis; treatment recommendations); aspects of care that th ey perceived as appealing and helpful; and what they suggest professionals can do to support them throughout the process of diagnosis and treatment selection. Depending on their interactions with health care professionals, parents described satisfaction or dissatisfaction with the response of the provider. The process of treatment selection entailed parents asking a series of three questions when deciding whether or not to pursue a treatment option. Additionally, parents described two questions that they as k when evaluating the effectiveness of a treatment, and whether or not it should be discontinued. Figure 4 1 provides a visual representation of the core components of the grounded theory. The following sections will describe the grounded theory in f our parts. In the first part, the process of obtaining a diagnosis of ASD will be outlined and described, as well as the interactions that parents had with health care professionals and pediatricians the pediatrician or health care provider are discussed, contributing to their satisfaction or dissatisfaction with the care provided. In the second part, the reactions of parents following a diagnosis of ASD will be descr ibed, including the questions that they begin treatment selection, including sources of information about treatments, barriers that directly impact treatment choice, t hree questions that parents ask when selecting treatments, and how parents evaluate the effectiveness of treatments and subsequently
85 Figure 4 1.
86 choose to terminate treat health care providers is discussed, including the extent to which practices aligned with other providers . Part I: Process of Diagnosis Parents of children with ASD described the process of obtaining a diagnosis as a critical step in accessing treatments for their child. Until a diagnosis was received, many parents indicated that financial coverage from insurance companies was limited. The concerns, initial contact with a pediatric ian or other health care provider, and referrals to specialists or other health care providers who may serve as a second opinion when evaluating whether or not the child meets criteria for ASD. Consistent with Goin Kochel, Mackintosh, & Myers (2006), paren ts report seeking multiple professional opinions before obtaining a diagnosis of ASD for their child. Initial concerns Parents described a period in which they began to have initial concerns about eas of language, social interactions, or the presence of restricted and repetitive patterns of behavior. Additionally, parents noticed associated areas of concern (i.e. sensitivity to sensory stimuli, strength) that were uncommon when compared to typically developing children. often surfaced around the age of two.
87 The following quote s are representative of parent comments referencing their We first found out that Charles had something different around the age of Se nsory issues were to sounds. And so, he was one of those children that always wanted to do things before , physically, he could. So, there was a lot of frustration from the time he was just an infant. Um, by the time he was 1, he had Hercules baby strength. He was CRAZY. He would flip over a big heavy rocking chair d flip that over into the with children was happening with Brian. He reacted to noises differently than ot her children. Like, he would go into these breakdowns if he was in an environment that was too much sensory. He was also, by the time he se it burned me last it again. When tracing back through the stories and comments referencing parents initial concerns, the following thoughts and statements contributed to initial concerns of parents: I knew something was wrong, something was different, and I began to notice. somet hing regarding their development was unusual. Affirmation from o thers Following their initial concerns, parents received affirmation from others that their they began to se sought out affirmation from others, asking teachers, family members, or friends if their
88 others who felt con provided the following words or statements when other professionals validated their concerns: She noticed, I think he has, you may want to (suggestion to follow up about concerns).The following affirmation they received from others: Oh yeah. So we knew something...we then ended up moving to another daycare closer to home, and then they said "You know, you might want to owner; she had owned this daycare for a very very long time. And she says "You know, I'm not trying to tell you what to do, but I think there might be and just the other kids. really out. An d that is when I got him officially tested. other children. And it was in kindergarten that his teacher had some And that was a relief to know there was SOMETHING to this. motivator for seeking medical e xpertise or opinion. One mother watched online videos of other children with autism that were available on the internet. Videos were provided that allowed her to see the subtle behaviors to look for in a child with ASD compared to typically developing chil dren. videos online, they have actually been very helpful, when parents post on their kids.
89 The videos provided affirmation at a time when others were dismissing her concerns, encouraging her to persist in her efforts to pediatrician. Initial contact with health care provider/pediatrician from others regarding their concerns, parents sought medical exper tise about their defense. Parents described two pediatrician responses that occurred. At times, the pediatrician would refer to a secondary provider such as a speech language pathologist, another pediatrician who specializes in children with ASD, a community resource (i.e. (i.e. psychologist, multidisciplinary center). Overwhelmingly, pa rents perceived that pediatricians lacked concern, urgency, or had limited time and interaction with their child. In addition, parents indicated that pediatricians would provide reassurance that there was no cause for concern, further delaying a diagnosis listening to and acknowledging their concerns , spending time interacting with the child and family, and the degree to which the parents perceived that the pediatrician was responsive to their concerns by taking action through a referral to another provider or community resource. When these conditions were not met, p response, often leading to a change in provider over time. The following quotes are representative of parent comments referencing their dissatisfaction with their initial contact with pediatricians or other health care providers:
90 When you go to a pediatrician, you get scanned by the nurse. Then, the doctor will come and see you. But the doctor comes in and they ask you Boom. Out the door yo easy. Whereas, saying it could be AUTISM, out. I am SO disappointed. She said, she gave me a really bad photo copy of them . N ot knowing what CARD was all about: Center for Autism and Related Disabilities. They are in no way, shape, or form , a medical facility. They are the school. I found that doctor to be was like [nodding head no], I switched [pediatricians]. He was always energetic and I had seen some things that I brought up to the doctor. In his car seat, he would just rock back and forth HARDER than said it was just self stim behavior, nothing to w orry about. At this point, around 18 months, he started not drinking any milk. He another freak out component. As a mother, THEY DID NOT ADDRESS IT ss it for YEARS I had absolutely no help from the, not the current pediatrician, the prior ups, she DID NOT detect ANYTHING. You know? ask know what to ask because it was my first child. [I had] never dealt with autism before this. No clue . Okay? I The pediatrician has been completely and absolutely appreciate that that is the first impression that people get from him. Not to be undervalued, or overlooked. That is a wonderful thing. But, then you spend an hour with him, two had this conversation before. We had this conversation ten
91 minutes ago the same conversation we just had. But he disregarded everything. And this has been common with so many other parents that have been to him. He does not like to give an autism then on two different occasions. I kept doing research on my own because I was someone who did have some medical background, so I knew more than I probably would have otherwise. When asked why they thought pediatricians did not recognize the symptoms of ASD, parents perceived that the lack of time , concern , or knowledge were barriers to identification of ASD. The following statements are representative of their perceptions: I am very jaded about doctors because d octors spend a minute time with l, you HAVE to take the time. s up. This adds up. my husband is a professional you for help. Autism i s a DEVASTATING diagnosis, and to be so lackluster about it was INCREDIBLY disappointing. I cannot emphasize that enough. I think PART of that is that amount of time that a diagnostician spends with him. They think they are having a spontaneous conversat ion with him, not realizing that if you spent the NEXT hour with him too, you would have the same conversation again. especially when they perceived that the pediatrician listened to and acknowledged their concerns, spent time interacting with the family and child, or were responsive to their concerns, making a referral to a specialist for a more formal evaluation or second
92 opinion. The following quotes are representative o f parent comments referencing satisfaction with their pediatrician: So, finally, after I talked to the pediatrician a bout it, I think she was pretty evaluated by a speech language patho It was very disheartening. Okay, so I kept pursuing with my pediatrician, pediatrician. He was very concerned, but reassuring. He eventually sent us out to a developmental pediatrician. Oh yeah . So, I switched pediatricians. I was still in the same aluated for all of that. So, this was a doctor who was on it! I liked her. She was on track. So his pediatrician is really good. As far as, we discussed what he thought about Brian after his years and years and years of experience. We decided the best way to pursue a diagnosis was to send him to the developmental pediatrician. So, I would say, yes. He did sit down with me. And he was really awesome let me know things I could do . He would talk to Brian. And address Brian personally, rather than making Brian feel like the third person in a conversation. Referral to specialist or another professional for a second opinion Following initial contact with a pediatrician or health car e provider, parents reported more satisfaction when their pediatrician referred them to a specialist or another health care provider for a more formal evaluation of symptoms consistent with ASD. Parents indicated that the referral occurred when pediatricia ns did not feel needs (i.e. developmental pediatrician specialized in ASD, a speech language tions of
93 Bu t anyway, he was evaluated and first we went through our family developmental pediatrician specializing in ASD]. hav e any talked to the pediatrician about it and she referred us to a speech pathologist, that was our first thing. De spite referrals to specialists, a diagnosis did not always result from conducting a secondary evaluation by a health care provider. Parents reported that some secondary providers also indicated that their child did not have ASD; often comparing their child to other clients they had with ASD and noting areas in which their child was progressing more typically. For example, one mother noted that after she was referred to a speech language pathologist by her pediatrician, the evaluation did not result in a dia gnosis: We went to [Community Provider] and saw a speech language pathologist there and she interviewed him and did stuff. Oh, and he also drooled a lot! He had really low muscle tone in his mouth, so he was like 2 and it was like drool factory [laughing]. pathologist was a little more worried about his TONE, but not that worried starts talking more, he She said a sentenc e and it was like a couple minutes later where she was EXACTLY WHAT communicating. We actually saw her twice. We went the first time and then we were supposed to wait 6 month s, but I was pregnant and SUPER second time we went back, she just said the same thing. She specifically told me
94 ences pursuing a diagnosis, they indicated that the process was cyclical. When pediatricians did not make a referral to another provider and did not acknowledge their concerns about their child, parents were left with their initial concerns and no diagnosi s or plan for treatment. One mother who already had a child with autism began to notice similar symptoms in her second child. She described approaching her pediatrician about the concerns she had regarding her I was knocking on with autism. Parents continued through the cyclical pro development, obtaining affirmation from others, and seeking medical expertise until a diagnosis of ASD was made. This finding aligns with previous research, which indicates that parents of children with ASD oft en seek four to five professionals before receiving a diagnosis (Goin Kochel, Mackintosh, & Myers, 2006). Part II: Reaction to Diagnosis Parents were asked to describe their reactions and emotions upon their child receiving a diagnosis of ASD. They descri bed the emotions that they felt following the often two fold. Parents descri bed acceptance and relief that there was a diagnosis to validation that their concerns were warranted. Additionally, they viewed the diagnosis as a starting point to begin making a plan for how to help and suppor
95 described a loss of expectations and grief when they considered what the diagnosis reactions following a diagno sis of ASD for their child: I was RELIEVED. RELIEVED and validated that there WAS something that they relieved. We wer e you know what it is that you say we were relieved to find out he had autism, but we were re lieved to have a starting point. Everything you have in your mind, preconceived notion of your children. know more about it. I knew NOTHING . All I know is Rainman [movie] at this SO MUCH glad to have some sort of diagnosis. I mean, I was thankful, but I was TOTALLY me, that is SO DEVASTATING. to kind of go through Kubler Ross, death and dying stages. You're going through all of somebody pulls your rug out from beneath you [tearful]. YEAH, so, THAT was brutal. there he is, right in front of you outlet was that he would be up all night out on the computer [s earching for treatments]. positive and hopeful that meant for their
96 positive outlook. Additionally, they described what they had learned from having a child with autism and how it contributed to their lives in a p ositive way. Although parents parental coping was an ongoing process and evolved with time, treatment, and changes in expectations. The following quotes are ex You know, I understand I was in the grief process. And it really took me 5 years to get out of it. I swear to you, it took me 5 years to TOTALL Y get out plan. So, anyways, you take time to absorb that. I think that was part of my learning process, too. I grieved. I learned to be have these expectations... He has taught me SO MUCH. Autism has taught me SO MUCH. So, as I empathetic towards people. I am becoming more of a community person. I realized what is real brand new Toyota four runner that want, but I am going to hold on to my van. It makes life sweeter. and when I am an adul where. I really hope that he has a wife. I do. Someone to look after him, someone to appreciate and love him, because he is real ly really sweet. I hope that for him one day. Parents often emphasized the need for a plan upon diagnosis, but did not always know comparison to children with a diagnosis of cancer emphasized the difficulty of receiving All along there has been this feeling of, sometimes, I do have to have a good plan I just have to have a
97 a plan right now. So, ideally, it would be more of an effective plan. At the time, the diagnosis was SO DEVASTATING . I was so UPSET. Forgive me for saying this, I understand my thought process, and it sounds organization. I need to have a game plan. I had ABSOLUTELY NOTHING. I was like almost jealous of these people that had kids with cancer, They had NOTHING for me. Parents hang out with their kids so much that ta king them SERIOUSLY, is REALLY important. But, then to have a diagnosis and have no place to go, NOT having a diagnosis is not helpful and then having one and not knowing what to also a challenge. In some ways it was a relief to get a diagnosis, even just HUGE body of literature, what do I read? Parent reac tions to diagnosis and hopefulness about the future appeared closely related to the pursuit of treatments and the degree to which parents had a plan for how to Part III: Process of Treatment Selection Following a diagno sis of ASD, parents can begin the process of treatment selection. The following including initial information seeking and information sources, barriers to treatment, treatment selection (i.e. thr ee questions parents ask when determining whether or not to pursue a treatment), and how parents evaluate the effectiveness of treatments. The process of treatment selection has also been described as cyclical, as parents continue to seek ongoing treatment money) become more readily available.
98 Information seeking and information s ources Upon receiving a diagnosis, parents are faced with the decision of what to do next. As discussed earlier, parents emphasized the need for a plan about what were asked who or what their key sources of information were when they were pursuing treatments for their child. Many parents re ported seeking information from pediatricians or other health care providers. At times, providers would give general recommendations while others provided specific cont act information for providers or directly referred the experiences with health care providers and pediatricians as an information source for treatment options: Each time it ha treatments, like medication and counseling. Those are the western treatments that he has received. And both of those were prescribe d. Like, need to see a specific psychol actually followed through with have been because it has been handed to us. So, finally, after I talked to the pediatrician about it, I think she was pretty responsive because she said One parent described how the process of seeking help from providers is humbling and how it is helpful to have specific recommendations and contact information for treatment providers: I liked the process [of getting specific information] because I am coming to really in a very
99 how to do, I humbly ask HERE . This is forting. Parents also reported the internet as a source of information across a range of websites, including general information seeking on search engines (i.e. google), professional autism organizations, and parent forums that were available for discuss ing treatment options. Furthermore, the internet was a place that parents could seek additional information about treatments after they were suggested by providers, helping parents to learn more about the treatment and determine whether or not they wanted to internet as an information source for treatments: I researched it. I researched it online because they were recommending here (points to occupational therapy building) to do the wellborn brushing. [searching for treatment options]. online, as a parent, you go online and you goog le EVERYTHING . I belong to at least 2 3 different online groups. Online support groups. ut I READ parent threads. If there is something that my doctor suggests that we might be trying next going While parents identified the internet as a valuable resource, some parents described the challenges of obtaining treatment information online: Well, being online is FABULOUS. But it is also a problem because you never kn ow who is putting out the information and unless you are very
100 skeptical, you can read some stuff and you do your own research. Vet it yourself. You know, if you research something and you come up with en, you have to really look it up and not just the good stuff. You really have to hunt for the bad. You kind of look at the site and if it is a national site, like dyspraxia is not a known title here in the states. So I ended up finding a link in the UK. And it was the national group and you go through it and you look at it and you read through the information. Some of them you can kind of tell if it is a good legit [website]. When using the internet, parents described the need to determine if sources were search for both positive and negative findings about treatments in order to determine whether or not they wanted to pursue the treatment for their child. Another commo n source of information that parents reported were other parents of children with ASD. Parents indicated that other parents of children with ASD were helpful resources, as they not only knew about available treatments, but they could also provide feedback about their experiences for therapies. The following quotes are representative of with ASD: Mothers. Mothers are a great resource. Forums and just throwing it out there to other moms who have children like him that are older. They are one of the best resources out there. I was in a mothers of preschoolers group. And there was a mom in there, Friends were a big source of information, especially one friend in particular who has a daughter on the spectrum. And she is just a person who is really good at gathering resources around her. And she was good at passing on information. You know, you have like a parent group. They try to put on little group things and a lot of times, parents will share information and that kind of thing. [I have been asked] to be a parent panelist where people can ask questions and that kind of thing.
101 I went ahead and got involve d with a forum for moms. So, I was able to source of some information. And we would also meet face to face as well. Other information sources, though less commonly reported, included attending conferences to learn about available treatments, contacting the Center for Autism and Related Disabiliti es (CARD), receiving recommendations from teachers or school providers, or referencing insurance laws and the coverage that is provided upon a diagnosis of ASD. One parent who attended conferences indicated that it was helpful to see what treatments were a vailable and determine whether or not they applied to her with ASD. Teachers or school pr oviders were sources of information and also helped parents connect with other parents of children with ASD. In particular, there were specific individuals who parents identified as someone who took the time to provide suggestions or sit down with them to offer them support. Additionally, one mother who had previously obtained her law degree utilized insurance law as a resource for obtaining information about treatments and the coverage that was provided through her insurance provider. Although this was hig hly uncommon amongst the parent participants, parents did indicate that their professional perspective (i.e. speech language pathologist, nursing, law) also contributed to their knowledge of treatment options. Barriers to t reatment After parents sought information about available treatments, they were faced with multiple barriers to accessing treatments. Barriers included a lack of knowledge about
102 treatments, financial coverage/cost of treatment, time, availability, provider specific behavior/preference for therapy. By far, time and financial barriers were the most commonly reported barriers to treatments. Semi structured interviews allowed parents to not on ly answer direct questions about barriers to treatment, but also describe situations in which the resources were limited and had a direct impact on their ability to pursue treatments. Additionally, as barriers become inconsequential and resources were more readily available, parents reported more flexibility in the number, frequency, or intensity of services they were able to pursue. Parents reported a lack of knowledge about available therapies as an obstacle to accessing services. One parent who wished t o pursue a treatment for their child noted the lack of knowledge of treatments as a l imitation, even when other resources (i.e.. money) were readily available: For instance, I would really like him to be in a social skills group right now. And that would probably be under, like a psychologist who would provide that. So our insurance will c over a psychologist, so THAT is not the I think if parents can have that information and know what services are out there, that would be VERY, VERY helpful. I think if we had a social skills gro up a long time ago that would have been helpful for Charles. Parents desired specific recommendations from professionals. Whether or not the parent decided to pursue the treatment, they indicated that just knowing that treatments or resources were availab le was helpful.
103 Financial barriers were one of the most prominent obstacles to accessing treatments, with parents noting that insurance coverage and the cost of treatment often impacted whether or not they were able to pursue a treatment. Parents assessed whether or not the treatment would contribute to a financial hardship on their family based on their monetary resources. When parents could not afford the cost of a treatment, they responded in various ways. Some parents decided not to pursue the treatmen t at all. Others noted that they were able to pursue the treatment, but not with the same intensity, frequency, or fidelity that was recommended. For example, several parents indicated that they knew applied behavior analysis was one of the most empiricall y supported treatments, especially when implemented approximately forty hours per week. While the parents were interested in pursuing behavioral services, they noted that the financial burden of paying for forty hours of week was not feasible. Several pare nts pursued behavior therapy with less intensity (i.e. 4 5 hours a week). Two parents also reported self implementation of behavior therapy, as they knew about the available evidence for the approach, but could not afford the intensity of services that is perceptions of financial resources as a limiting factor in treatment implementation: a week. Which, at 80 bucks an hour, is impossible. For a couple years that qualified us for Medicaid. At least three to four years on Medicaid. Whic h is the BEST thing to ever happen to us. Not for my health, not for his health, but for the children, because they covered EVERYTHING . And he got the therapy and I saw the benefits of it. But I minute session. Sixty dollars!
104 ABA [Applied Behavior Analysis] is a new thing that we [began], and THAT has REALLY helped him. We s tarted that and we had to drop out of it everything e needs it. I ha ve to learn it. a lot of money into biomeds. And I really like behavioral therapy. I truly believe in that. I feel l ike for my child, that really helps. [Parent indicated she began implementing at home]. However, now, I need more help from a therapist. Again, that is expensive too. And we just have to align our budget for that. So, any kind of therapy that was suggeste just MONETARY reasons. So they [insurance company] have chosen not to pay for treatments for autism. So, that has been a VERY HUGE barrier. Our health ins urance is [name of insurance company], which is what covers the occupational therapy, and I have fought with them for years and years and years and you get twenty visits. That appeals and though the reason it is medically necessary, you get twenty ll you get. So, as it is, even though I have insurance for twenty visits, I still ha ve to pay fifty seven dollars. An d then, after the twenty visits, I will have to pay one hundred twenty doll ars per visit. Well, just trying different things, because as a parent, you want your child to succeed. You make sacrifices and you try to figure out. I mean, it is a sacrifice to not work and to not have that extra income. Especially trying all of these therapies. I mean, we will probably have to hit a certain point here comes. Social skills are going to be th irty five to forty five dollars, but that is once/week. You know, when you start to add up those kinds of things and parents tend to pursue outside help, I tend to do the researc h and do the intervention myself Finances are probably the number one thing you will find [as a barrier]. It is EXPENSIVE . There are no scholarships or grants that are accessible. The first time it was recommended that he needed occupational therapy was when he was in kindergarten when we had him diagnosed with
105 a stay at home mom at the time and my Just as money would serve as a barrier for some families, other families noted that when more financial resources were available, they were more likely to pursue treatments they might not otherwise be able to pursue: I am lucky enough that it may hurt financially, but at least I can still pull it off That is a factor for a lot of people My parents helped us pay for [hyperbaric chamber treatments], because I exactly . It was not CHEAP. But my parents helped us pay for that. services and whether or not the cost of treatment outweighed the benefits that their child was receiving in therapy (as discussed in the following sections of treatm ent selection and evaluation of effectiveness). Moreover, parents noted that when their child was receiving supports (i.e. speech, occupational, or behavior therapy) in school, they could not always justify the need to pay for outside services to address t needs, sometimes discontinuing private therapies. Overall, the themes of treatment cost , financial burden, and insurance coverage decision making process. Time emerged as another prominent barrier and con sideration for families. More specifically, parents described time getting to therapies, the intensity of services (i.e. frequency of visits, number of hours), location and distance to therapies, or an overall busy lifestyle as obstacles to treatments. Des
106 therapeutic needs, time remained a prominent barrier to treatment. Often, time and money co occurred as obstacles. For example, when it w as suggested to pursue a therapy for several hours or visits per week, parents not only struggled to fit the time hour. And they want to see him 2 or 3 as a barrier to treatment: earlier, maybe 2:00pm. So, we thought as soon as the time changes, let us know! And as soon as the Well, and then the other thing would be a lack of time for researching what social skills group right now, which could po ssibly be through a good counseling psychologist that my insurance would reimburse for. However, I am working three jobs right now. I am not sitting down at the end of the day when I get home at 10:00pm figuring out where the [resources are]. It would be n ice if it were a little more obvious where the available resources are. I think when we stopped OT [occupational therapy] and we might have We really badly managed. We would wait for an hour for him to be seen. And Similar to the consideration of financial burdens, parents assessed whether or not observed outcomes of therapy justified the amount of time that was required by therapies (as discussed in later sections of treatment selection and evaluation of effectiveness). Parents i ndicated the amount of time suggested for some treatments
107 was unreasonable, given their busy schedules. For example, one parent described her brushing with frequency that was unreasonable for her and her family: when you take them and kshhh, kshhh, kshhh [pretends to brush arm], it actually feels good. It feels REAL good . I've done it on myself. However, they want you do EVERY and not feel guilty when I miss a two hour window, because THAT IS IMPOSSIBLE . That is ABSOLUTELY IMPOSSIBLE , especi ally for someone like me , who's schedule changes every day. I mean, I've come so why are you giving it to me a t all? making process. Time for implementation and treatment schedules were barriers, in addition to waiting lists here was a six Additional barriers that overlapped with time as a barrier to treatment included the availability of providers and the location of services. Availability included the number of providers in the community and the times that the therapy was offered throughout the day/week. For example, many parents desired that their children remained in school as much as possible and appointment times before or after school were quickly filled , limiting the availability of treatment providers. Well, another barrier, as you can imagine go to all of these treatments, I have to finagle during the day to be able to go to all of them because some of the places have after school hours. Charles goes to school from 9:00am to 3:30pm. Well, everybody wants the afternoon hours, but nobody works after 5 o clock. As a parent, I was impossible .
108 Furthermo re, some parents perceived that there were a limited number of professionals who could provide services, limiting treatment accessibility. Parents referenced waiting lists for multiple therapies, given the limited number of providers and high demand of the rapy. One parent noted: Occupational Therapy to get a good occupational therapist, there is a waiting list. There are not a lot of, AVAILABLE affordable therapists. Additionally, the location of services was a limiting factor, in that it required more of previously heard about equine therapy noted her reason for not pursuing the intervention was the location of the therapy and the limitation of a busy schedule, in addition t o the unclear benefits she perceived from the therapy: Well, there is horse equine therapy. LOCATION [is a barrier]. It was very very far out. Again, it is just another thing to add on to your list to do. You only have so many hours in a day because they h ave to eat. Sometimes him. Another pare nt indicated multiple barriers to treatment, including the location of therapy, available therapists: trying to work in swimming lessons [has been difficult]. They are going to summer camp and they have swimming l essons and it is a half hour, but it is at [local university], so with parking, you have to get there at 4:30pm. You know, it turns into a thing. Juggling the schedule is tricky. You not only have to juggle your schedule, but also what is available with th e therapists, because there are a very limited number of therapists.
109 While the previously mentioned barriers to treatment were the most prominent in finance, time, avail ability, location), some parents also mentioned that provider specific variables (i.e. environment, child behaviors in the therapeutic setting were challenging. Provider specific variables were influent ial in their overall satisfaction with care. Parents described how the therapeutic environment was sometimes overwhelming or over stimulating for their child, making it The [ho nightmare . So contained, for two hours. Furthermore, parents noted the importance of the child therapist relationship. A good relationship between the child and therapist was noted to facilitate the therapeutic In con trast, when parents perceived that the child did not have a good relationship with their therapist or provider, they anticipated more behavioral difficulties. The following therap ist relationship: He had a phenomenal experience with this phenomenal , phenomenal tutor who had thirty years of experience. Their personalities just blended really well. And I could not believe the academic gains he made. First of all, whoever is doing the therapy has to have that connection with During behavior therapy, Randy would do SO WELL with most of them [therapists]. However, there are two or three of them, OH MY GOODNESS . They should not be in this. They d id not have the right tone, they acted annoyed. Again, he is smart. He knows exactly what you are feeling. I
110 take a lot of self worth from your response to him. So, it really does matter. To me, it matters. He just really clashed. So, they ended up deciding to switch her out with someone else. And the OT [occupational therapist] went out of town. We told our son, back in town, NO call and no show the day he was supposed to come back. And that really devastated my child. I had a little bit of resentment at the time. So, I just discontinued his services. And all of the therapists have been really good and Ben really liked his OT [occupational therapist]. He clashed a little b it with one of his therapists. Even now, he has one therapist who I am not sure is quite the right fit. Overall, when tracing back through stories and comments, parents referenced many obstacles to treatment. Categories were formulated when comparisons we re made within and across parent interviews, allowing the most common barriers to emerge Treatment s election emerged that they ask themselves to assess whether or not to pursue a treatment for their child. By asking the three questions, parents addressed concerns for safety, of incorporating constraints and fiscal flexibility. The three assessment questions are: Is the treatment potentially harmful? Does the treatment propose to address an area in which my child needs support? C difficulty (i.e. impact on money, time, or use of other treatments)?
111 The next sections will present the criteria for each assessment question and provide a description of how parents answer the assessment questions (i.e. how they determine if a treatment is potentially harmful), along with the ongoing interactions that they have with health care providers in the process. Assessment Question One: Following identification of av ailable treatments, parents answer this question, parents obtained information about a prospective treatment through several resources. At times, they obtained information from health care parents utilized the internet or interacted with other parents of children with autism to atment. There were potential harmfulness, as Table 4 1 illustrates: Table 4 1 Treatment Selection: Criteria for Assessment Question One. The treatment is considered saf e when: The treatment is considered potentially harmful when: There is not evidence to indicate that it may be or has been harmful to their child. There is limited information available about the treatment. Providers suggest the treatment and give effectiveness Providers express concern about the implementation of a treatment. The treatment is a natural approach. The treatment is invasive. The treatment does not appear to be invasive or dangerous There is evidence that the tre atment has negatively impacted other children with ASD or had negative side effects for their child. There is no controversy regarding the use of the treatment. The treatment is considered controversial.
112 At the initial consideration of a potential treatment, parents are quick to consider the well being of their child, specifically evaluating the safety of a treatment. As several parents stated; intervention that is going to hurt him. I am a speech therapist and everything you push, or everything ASHA [American Speech Language based practice, E know that there is stuff that evidence based, but we still do it. You somehow going to harm your child. And nobody wants to say that they are doing something crazy and could possibly harm their child. When parents indicated that a provider suggested a treatment and gave evidence to was saf e for their child. In contrast, when there was limited information about the treatment or a provider expressed concern about the implementation of a treatment (i.e. diets), parents were likely to continue their assessment of the potential impacts of an app roach. Similarly, if there was controversy regarding the use of a treatment, parents were likely to continue assessing for potential harmfulness. When parents perceived that treatments were less controversial, they spent less time assessing the potential f or harmfulness. For example, one parent who pursued common treatments for ASD noted, mother was asked if she perceived a biomedical approach to treatment was harmful, she expr potential harmfulness of the approach: NOT AT ALL. And that was what was so funny, because the other doctors, medical
113 doing anything unnatural. We are supplementing what he needs. He is not getting the vitamins and minerals t And, this is what is so ironic. I remember they gave me the HARDEST time about changing the diet. They [mainstream doctors] were just like eating meat again. And up to this point, he had absolutely refused all proteins. Moreover, the invasiveness of a treatment was another consideration in the potential for harm. When pa rents perceived that the approach was unnatural or required more invasive procedures than usual, they were less likely to pursue the treatment. The treatment: So, I think [ my husband] was reading something about brain stimulation. We are NOT going to be pursuing that. He [child] can pursue that when he is twenty if he gets really into the idea, but things like that that are a little INVASIVE . But we have to talk abo ut it and I think I really made it clear that I am willing to pursue [treatments] that are gentle and non invasive. I have sort of said I am willing to do some of the alternative stuff because it is not invasive. ANYTHING about the biomedica l approach. It was new to me. I remember just walking into her office because you are desperate desperate things. Depending upon how parents answered this assessment question, they arrived at a decision of whether or not to pursue a particular approach. If parents perceived a treatment was safe, they more readily embraced the approach. If parents had an inclination th at the treatment was potentially harmful (i.e. lacked information about the to collect information about the treatment until they came to a decision. At times,
114 paren ts initially were hesitant to pursue a treatment when criteria were not met (i.e. treatments were controversial), but later concluded that the treatment did not compromise safety for their child (i.e. treatment was a natural approach). Assessment Question Two: In addition to evaluating the safety of a treatment, parents Does the treatment propose to address an and determined if the particular area of difficulty. For example, parents determined that speech and language the expecte d outcomes of some treatments were unclear, so it was not obvious how a the treatme 2 illustrates. Tab le 4 2 Treatment Selection: Cri teria for Assessment Question Two . The treatment proposes to target areas in which my child needs support when: The treatment may not be targeting areas in wh ich my child needs support when: It is clear what the expected outcome of the treatment is and needs. It is unclear what the benefit of the therapy would be for my child . with the goals of the therapy goals of therapy. Professionals provide information about the expectation for therapy (i.e. improved communication) and it matches Professionals do not provide information about the expectation for therapy outcomes.
115 Parents reported that it was helpful when they knew what the various treatments parent reported learning about a chiropractic elimination therapy, which was reported to nd behavioral difficulties; And the reason we are doing [chiropractic elimination therapy] is one of the thoughts is that when you are allergic to things in your environment, it can create built up frustration, anxiety, and behavior issues. So, when we wen t to our pediatrician and got the blood work, we found out that Charles had a lot of the allergies to wheat and casein, which a lot of autistic kids do. He also had some garlic allergies, as well as other factors. So, there are theories and as a parent, yo u are going to try things to see if it is going to make a difference. So, what we are trying is we are doing an elimination thing. We went yesterday as a matter of fact. They do Chiropractic AND elimination, so I brought in garlic, which was listed on the blood work originally and some cinnamon as a spice. So, we try to go through and we try to eliminate. So for 24 hours, he does these pressure points. It almost reminds me of reflexology and how people think of different parts of the body. Anyway, he does a pressure point kind of thing and you eliminate it for 24 hours and we have found that he is not as sensitive to those specific factors. Additionally, she noted the other therapies the family was pursuing and the behaviors or symptoms that they were intend ed to target; Like I said, the occupational therapy is working on the coordination, thought process, and the processing disorder. The chiropractic is working on the allergy piece. The pediatrician, because of the blood work and genetic factors that she has found from kids on the spectrum, and specifically, Charles, is working to introduce the B12. Neurofeedback is helping his brain to be able to process and to help with his attention and ability to be able to sit and focus on things. Despite the fact that some treatments are not considered evidence based, parents report getting information about their potential benefits. Regardless of the scientific evidence available, parents are willing to consider treatments when they are reported to areas of weakness.
116 A theme of desperation selection. They admitted that they were willing to consider just about any suggested treatments, under the conditions that they perceived the treatment was s afe and treatment selections; And I guess other things that I have tried were th is clay bath that is howling under the moon and turning around three times at midnight would Furthermore, some parents reported discontinuing when they perceived that the child no longer needed support in the area in which the treatment was intending to target. For example, one parent noted that she had discontinued speech therapy because he r child no longer needed it. Moreover, Brenda and Sam were two parents who indicated that they had not pursued any treatments for their child. Brenda, the mother of the child, indicated that she was a social worker who worked with adults with intellectual answer t o the second assessment question, as she did not feel that he needed support that could be addressed by treatments. Although the parents had not yet pursued any treatments, they were considering seeking a social skills group to address the social difficult ies that they were observing: involvement is so little. Sometimes I forget that he processes differently, because he LOOKS so normal. Except for when you see him social
117 settings, then he can look more awkward. He is big for his age, he acts a little immature, and he will knock people down not because he means to, seen some [children] who are very involved. Additionally, Brenda and Sam mentioned treatments that had been suggested to them previously, including medication for their child. They noted that they had considered the treatment, but felt it was not consisten last visit and he said that medication would not help the social difficulties nse to the second assessment question directly impacts whether or not they pursue a treatment for their child. When parents perceived that their child did not need support in the area in which a treatment intended to target, they reported that the treatmen not pursue it. Assessment Question Three: appropriateness of the therapy for their child, they ask themselves the assessment question: Can the or difficulty? In Table 4 3, there are several conditions that parents emphasize when answering this question about a treatment. time, money) was critical in their decisions to pursue a treatment. Essentially, ongoing barr iers to treatment were noted to greatly influence their ability to provide services for their child. Most commonly, parents assessed if treatments were realistic, based on fiscal flexibility and time for implementation, in addition to the impact of treatme nts on
118 Tab le 4 3 Treatment Selection: Crit eria for Assessment Question Three . The treatment does not contribute to undue hardship or difficulty when: The treatment would contribute to undue hardship or difficulty when: The cost of treatment does not have a negative impact on the resources. financial resources, placing significant stress on the family. The family has the time to implement the treatment. The amount of time expected for therapy could schedule with ease. Pursuing the treatment does not require the family to discontinue other prioritized treatments. Pursuing the treatment required the family to discontinue preferred treatments as a result. Implementation of the treatment was difficult to the entire family (i.e. diets). Parents perceived that the treatment was unrealistic to the cost of treatment or lack of insurance coverage would place additional stress on the family. Given the cost of many treatments and related financial barriers, as previously discussed, parents sometimes had to turn down treatments that they desired for their child. As several parents stated; I mean, anything that I have that is a valid thought, I am pursuing, something that we can afford. a week. Which, at 80 Things that I have Before, he got the t now because it is $60 if I take him for one 45 minute session. Sixty dollars! it, but again, due to financial means, I can the occupational therapy.
119 One thing that we did lose on our insurance was [coverage of] behavioral modification. At about the time that I found out about it, our insurance behavioral intervention therapies were a no go. I mean, they are not cheap. One parent who indicated that her child was diagnosed with Pervasive Develo pmental Disorder Not Otherwise Specified (PDD NOS) reported that her insurance company would not cover services for her child unless he had a diagnosis of Autism Spectrum Disorder (ASD). She reported significant financial barriers to treatment, despite h er I think he needs OT. There was a time when I think he really could have used some speech and language therapy, as well. Had we had the proper diagnosis in order for the insurance t o kick in, then I would have pursued that. that he needed occupational therapy was when he was in kindergarten when we had him diagnosed with sensory processing disorder. That was w Occupational therapy and speech therapy, we have t alked about, and that is a really big thing. It seems like they would be the obvious treatments he needs. He is diagnosed with sensory processing issues and they are constantly agit ating him and preventing him from getting good nutrition ually make this parents reported the time required for some services could not be easily incorporated existing therapy commitments. Despite
120 n resulted in the conclusion that the time limited their ability to incorporate treatments into their And at the time that I WAS working, it became a problem taking him to therapies. I was a manager and I had to be there from 8:00 am to 5: 00 pm. finagle during the day to be able to go to all of them because some of the places have after school hou rs. Charles goes to school from 9:00 am to 3:30 pm. Well, EVERYBODY wants the afternoon hours, but nobody erapists and the scheduling is actually a REALLY BIG barrier, because you want to get the real life, but you also have to work within the therapist schedules. Moreover, some parents no ted that implementation of a new treatment or approach would place a burden on the rest of their family. More specifically, several mothers noted that implementing a diet was unrealistic, as their entire family would have to conform to the diet and for tha t reason, could not be easily incorporated into the Evaluation of e ffectiveness Following treatment selection, parents engaged in an assessment process in which they evaluated the effectiveness of a treatment. Limited research exists th us far understand their process of evaluation. Overwhelmingly, parents utilized a cost benefit analysis by asking two questions;
121 Are there positive changes that can be observ improved speech, improved social interaction, more focused, etc.)? If so, do the improvements justify the amount of TIME and/or MONEY invested in the treatment? The next sections will present the criteria for each assess ment question and provide a description of how parents answer the assessment questions (i.e. how they evaluate if Assessment Question One: Following initiation of a treatment, parents reported asking themselves the assessment question: Are there positive changes that can be There were several conditions in which parents were able to assess whether or not a treatment was effective for their child, illustrated in Table 4 4; Tab le 4 4 Evaluation of Effectiveness : Crit eria for Assessment Question One . The know the treatment has had an when: The impact of the treatment is unclear when: I can observe improvements in my (i.e. more focused, improved speech). behaviors. Therapists provide feedback or data to support improvements behaviors/symptoms. therapy, report attainment of goals, or provide data to support that the therapy has resulted in improvements in behaviors/symptoms. The treatment is removed and my decline other prioritized treatments. with the removal of the treatment. Parents indicated several ways in which they were able to evaluate the effectiveness of a treatment. First, many parents noted that there were observable
122 example, several p administration of medications for attention or anxiety, suggesting improvements in their observations wer e sufficient in their determination that the treatment was contributing to positive changes. Additionally, parents reported that it was helpful when health care professionals provided feedback, data, or assessment reports after monitoring their gress throughout a treatment. For example, parents reported that certain speech and language providers administered an assessment every six months to parents was also not ed to be helpful in reassuring the parent that their child was making progress. Finally, parents reported times when there was a natural obstacle to continuing treatment (i.e. ran out of medication, therapist moved away) when the child was no longer receiv ing a particular treatment. At those times, parents indicated that parents noted this difference, they were more inclined to re initiate the previous treatment as a result. When asked how they evaluate the effectiveness of treatments, parents described their thought process; life any better? Are the things that you WANT to see improvements in changing? You know, that is the number one thing. Are you seeing things have changed because he can communica te better? Is he stimming less so he can pay I do. Well, obviously, with biomedical [interventions], if he has gluten the next day, he is a bear, he is more hyper. He also takes serotonin. His brain does not produce enough serotonin and makes him more aggressive if he
12 3 free diet for an e ntire year and saw nothing. By far, the absolutely most effective treatment he has received is cranial that the brain can breath with the cranial sacral fluid. You know there is a membranal pulse of the cranial sacral fluid and the cranial sacral fluid is manufactured in your head and protects your whole spinal column. So, by y his left temporal lobe, or by his right temporal lobe, temporal bone, temporalis was jammed. So, standing there across the room THINKING about touching him and he therapy really basically taught his nervous system how to receiv e touch. The teacher says [the weighted backpack] really helps. And during FCAT, he wore it, and it helped. I guess there is some scientific study, I never researched it, it was just an observation from the teacher and they started testing it and it seems to help him control himself. The thing is, every single kid is different and every family is different and I am not opposed to anecdotal evidence. I think it can be really valuable, because a lot of times, especially stuff like the diet, it is hard to do a study that is talking about cutting out dairy from your diet. Kids are so different. So, that was something, with trial and error, is it something that could work crazy land. An TON of anecdotal evidence and we tested it, and for us, it worked! One parent reported how a treatment provider charted d ata to support their own interest in the success of the treatment. Additionally, she noted her hesitation in trusting the evaluation of the provider; We participated in a study of chia seeds, testing the effectiveness of the omega acids in the chia seeds . They were looking at how it helps autism, attention deficit, constipation, and a number of different things. And there was some charting there, but there was definitely a feeling at the end, like elt like they kind of REALLY
124 the company that was making the chia seeds that was running the study through a ped At times, parents reported a clear link between a treatment a nd changes in their many parents reported an obstacle to determining treatment effectiveness, specifically that they were implementing simultaneous treatment approaches, wh ich is noted in previous literature (Green et al., 2006). When a child was receiving multiple treatments, parents acknowledged the difficulty of determining which treatment was contributing to experiences evaluating effectiveness when utilizing simultaneous treatment approaches; It is REALLY difficult. Right now, it is very difficult because we are doing so many [treatments] at a time. Neurofeedback, chiropractic elimination, B12, and occupational therapy. So, he has 4 things that are going on right anything because you are not sure which one is working. So, that [cranial sacral therap y] happened at the same time he was doing Feldenkrais stuff or the cranial sacral that helped, but there was a shift ing scientific about it. they perceived their approach as acceptable when their child was making improvements. One parent reported how her desire for improvements versus an analytic evaluation of treatments coexisted at the same time; two just going to g
125 WHY he is improving, I just need some help. And then, there is the analytical part of myself that wants to When parents were trying simultaneous treatments and needed to eliminate a treatment based on their resources (i.e. time or money), they were more likely to eliminate a therapy with less evidence for effectiveness based on observations, data, or available research; I have (hesitation ) [seen improvements from the use of neurofeedback], but the crazy thing is that the attention can also be attributed t o your calming and that you feel better about yourself. So, you can attribute that to the B12 . So, I would say that the neurofeedback is the one that is the most difficult to KNOW eliminate something that I that would be the one I would probably do. I am definitely more inclined to pursue 5 hours of ABA instead of 2 hours of ABA and 3 hours of oxygen therapy. With oxygen therapy, it MIGHT to evaluate whether or not that has an impact. Maybe that is part of it, that I am much more research based. Assessment Question Two: In the process of evaluating whether or not a treatment is , parents also assess if the changes justify the resources that are invested in the therapy. Parents reported asking themselves the question: justify the amount of time and/or money invested into trea tment? There were several conditions in which parents were able to assess whether or not a treatment was cost effective, illustrated in Table 4 5; Parents utilized a cost benefit analysis to assess whether or not a treatment justified the resources they i nvested in the treatment. When a treatment resulted in positive changes in an area of need for their child, parents could justify the amount of time or money they invested in the treatment. For example, when parents indicated that
126 their children benefitted greatly from occupational therapy, they felt their financial Moreover, when an investment in a treatment was minimal and did not place a burden on the family, p arents were more likely to continue pursuing a treatment, despite a lack not observe measurable gains as a result of hyperbaric chamber treatments, she continued pursui ng the treatment due to the fact that she had financial support from her family to pay for the treatment. Tab le 4 5 Evaluation of Effectiveness : Crit eria for Assessment Question Two . The impact of the treatment justified the amount of time or money when: The impact of the treatment does not justify the amount of time or money when : The treatment contributes to positive changes that justify the time invested by my family. The amount of time spent implementing the treatment is greater than expected, given the minimal evidence for effectiveness of the treatment. The treatment contributes to positive changes that justify the money invested by the family. The amount of money required to implement the treatment is greater than expected, given the minimal evide nce for effectiveness of the treatment. The amount of time or money needed to implement a treatment is minimal and does not place a burden on the family. My child receives corresponding therapy in school that is sufficient to address their needs. When parents perceived that the amount of time or money outweighed positive outcomes, treatments were discontinued. Many times, when a child was receiving discontinue outpatient serv ices to conserve resources. The following quotes are benefit analysis when considering treatment effectiveness;
127 He had been really successful in OT, but we kind of decided that he reached a point in OT where getting that much out of it any more when he is going ABA, speech, and going to school and learning and doing all those gross motor stuff. You kn ow, some of the things that I look at include, of course, whether or juggle What will the treatment DO for him? What do I hope to achieve from it? Like OT [occupational therapy] w as to work on sensory integration, or work on coordination, or work on things. So, you kind of have to read about the treatment. What benefit is it going to have? Is it going to be a significant enough benefit for the cost? Is it going to be worth the time ? For example, at school they offered OT but it was only going to be for 30 minutes a week. Well, by the time they get started, they probably have 20 good minutes of work. So, are you really getting a lot out of it? No. So that is why I ended up having to pay for it privately because it was such a great benefit for Charles, that I felt like he NEEDED it, so I felt like it was worth the sacrifice, even after my 20 visits covered by insurance were done, to pay for it out of pocket. So then I had to pay 120$ a week. I felt like it was worth it and it was an hour long session and the things that they worked on were benefitting him. We saw a counseling therapist, for his anxiety. All in all, she just was not helpful. I mean, she was helpful for us [parents], hel ping us to kind of probably about 6 CERTA INLY getting ENOUGH out of it to justify the TIME . Parents reported several ways that professionals can help them in the process of evaluating effectiveness of treatments. First, parents noted that it w as helpful when the impact of a treatment. Parents indicated that bi annual assessments or wee kly feedback was helpful to answer their initial assessment question regarding when professionals describe the specific behaviors/symptoms that a treatment is
128 intende d to target. This allowed for parents to focus their observations on the treatment objectives. For example, after starting a supplement recommended by a biomedical doctor, one parent was informed to expect improvements in his language. It is evident that p rofessionals can play a significant role in supporting parents during the process of treatment evaluation. discontinue treatments. Similar to the process of diagnosis, the proc ess of treatment selection appears to be cyclical. As more resources (i.e. time, money) become available following termination of treatments, parents may begin the process of treatment selection again, seeking information about other potential treatments. Within the population of parents that were interviewed in this study (parents of children ages six to twelve), each of the parents described treatment selection as an ongoing process. It remains unclear if the process continues to be cyclical throughout th e lifespan, or if Part IV: Shared Decision Making providers, and more specifically, wheth er or not they had experienced the process of shared decision making. According to Bryant (2012), shared decision making in the have access to accurate information and t can come to a shared understanding of the best plan of action for that particular described their interactions with health care providers, their perceptions, and the factors that contributed to positive or negative experiences. The following section will describe
129 conditions that were or were not met within parent provider interactions, contributing to tive perceptions of their interactions with providers. Parent Provider I nteractions inte ractions with the parent. Provider interactions that were more consistent with shared provider interaction. In contrast, parents also recounted responses and actions of health care pro viders that resulted in more negative opinions of the parent provider interaction. illustrated in Table 4 6. Parents perceived positive interactions with a health car e provider when several conditions were met. First, parents indicated that it was important that providers listened to, acknowledged , and valued th eir concerns. . For example, when parents presented their initial concerns to the provider, they applied more positive attributions to providers who addressed their concerns by making a referral to another provider or further she was on it, I have a GREAT pediatrician ); t and saw the speech pathologist, but I still have concerns. She says nothing is wrong, developmental pedia trician, for a more intense evaluation. I mean, if you that way.
130 Tab le 4 6 Conditions for Evaluating Parent Provider Interactions. Parents perceived positive interactions with a healt h care provider when the provider: Parents perceived negative interactions with a health care provider when the provider: Listened to and acknowledged their concerns. Did not listen to or acknowledge their concerns. Acknowledged and valued parents input on their child. Was available when the parents needed to contact them about their concerns. Was not readily available when the parents needed to contact them about their concerns. Took the time needed to discuss concerns and treatment options for their child. Did not provide the time necessary to get to know their child or family. Took the time to get to know their child and family. Did not provide the time necessary to discuss concerns or treatment options for their child. Took time to review and explain results of medical tests or treatments. Presented recommendations without eliciting parent feedback or thoughts regarding treatments. Obtained information from outside the clinical setting (i.e. school, home) . Was perceived as judgmental or condescending alternative treatment approaches. Encouraged two way conversation between themselves and parents. In contrast, parents described negative attributions about providers when they perceived that the provider did not listen to or acknowledge their concerns; Whereas, saying it could be AUTISM, Secondly, both time and availability of pediatricians to discuss concerns or when pediatricians were available and responsive when they had urgent concerns about their child. Additionally, parents were pleased when providers took time to discuss concerns, treatment options, or provide feedback about test results. Moreover, they
131 appreciated when providers took time to get to know their child and family. In particular, ns of time as a facilitator to positive interactions with their providers; ANY time I need, if I am in crisis mode, we schedule an appointment and she will see us. She is AWESOME like that. I sat with her about 45 minutes going over this, all this blood work and everything. So his pediatrician is really good. We discussed what he thought about Brian after his years and years and years of experience. We decided the best way to pursue a diagno sis was to send me to the developmental pediatrician. So, I would say he did sit down with me and he was really awesome about it. I email my biomed doctor. He emails me back. We have phone THAT is how we decide ored to the child. In contrast, parents also described negative interactions with pediatricians when they felt that the doctor did not provide sufficient time to discuss diagnosis or treatments with the family; This man is infuriating. He spent 15 20 minu tes in there and he was like research by the second time I went back to him. He STILL would not entertain it. So, I was frustrated. SOMETHING is going on with this kid! You are being WAY TOO
132 I try to talk you about this more, it is not going to go anywhere, and it is Of note, several parents reported currently pursuing a biomedical doctor, who was described as someone who provi ded quality time to parents by offering in depth comfortable environment for discussions and a prolonged period of time in which they descriptions of their experiences with a biomedical doctor appeared to be aligned with practices of shared decision making, in which the doctor took the time to sit down with parents, offer a discussion of treatment options, and elicit a two way conversation ; It was so laid back. And I am okay with la id us. But, she really did. She really did sit down and talk to us and I LOVE her. She has an office aside from this whole separate building where she has this BEAUTIFUL office where there is a fireplace. And she really does sit down with us. And she has to do that because each child is different. And they all have health concerns. When we actually had blood work done and talked about other alternat ives that we could do, that was probably about an hour. Just sitting and talking. She had a little couch area. She had two sites in the same complex building and she had this little sitting area where you could sit down and ask questions and things like th at. Recently, a lot of times when he would go to his pediatrician, we would talk about different things like vitamins to try or to introduce and get into his diet. We would talk about his diet and different things like that. work and we actually went in and made another appointment. I sat down with her and went over the results of the blood work and talked about different things that we could do. So, we actually had a consultation. I wa s always open with her about things that I was trying and different things we
133 really good at really wanting to sit down and explain why she thinks stuff is what his body needs to d o, so he really does need a supplement to help Parents also reporte d satisfaction within the parent provider interaction when the Parents appreciated when providers considered more than their brief interaction with the child by asking you]. That eliminates barriers when you come to therapy. They talk to you ome? What do you see at school? Overall, parents described more positive attributes of providers who were responsive, available, and collaborative during their interactions with parents. Specifically, the time the provider spent with the parent often aligned with their level of satisfaction with care. When parents perceived that the provider took time to listen, acknowledge, and respond to parents concerns, they reflected more positively on their experiences. Moreover, they appreciated when a provider took time to get to know their child and family or took time to discuss treatment options through a collaborative two decision t some professionals were engaging in a collaborative process of treatment selection which aligns with the practices of shared decision making. Specifically, it was most often described within the context of interactions with biomedical doctors.
134 Rationale for the Selection of Two Parent Experiences to Illustrate the Theory Two parent experiences were selected to illustrate the theory in Chapter Five. In making process in selecting treatments , the two parent experiences are contrasted based on critical resources namely, money and time. The parents had varying family incomes and financial resources (i.e. one parent was provided additional monetary funds from family members). Additionally, on e parent was working three jobs, while the other was currently staying at home and serving as the primary care coordinator for her child. Given that time and money were re occurring barriers or facilitators woven throughout process is influenced by the availability of resources.
135 CHAPTER 5 The purpose of this chapter is to provide an example of the grounded theory by applying it to two vignettes of parent experiences throughout the decision making process. In the first example, the theory will be illustrated by applying it to the decision ma king process of a parent with more available financial resources. In the second example, the theory will be illustrated by applying it to the decision making process of a parent with limited financial resources and more barriers to accessing treatments. It is not proposed that the two examples provided are exhaustive of the realities or variables demonstration of how the grounded theory allowed for the accommodation and expl making process in selecting treatments for their children with ASD. The grounded theory presented in the previous chapter reflects that parents go through separate processes of diagnosis and treatment selection. Within the process of diagnosis, parents go through multiple steps, including 1) recognizing initial concerns, 2) seeking affirmation from others, 3) pursuing expertise from a pediatrician or health care provider, and a t times, 4) pursuing a second opinion or referral to a specialist. Parents described the process as cyclical, continuing through the iterative process of having concerns about their child and seeking affirmation and a diagnosis. They indicated that they co ntacted multiple professionals throughout the process, persisting when pediatricians or health care providers did not initially provide a diagnosis. This finding was consistent with previous research that indicates that parents of children with ASD
136 often s eek four to five professionals before receiving a diagnosis (Goin kochel, Mackintosh, & Myers, 2006). Following a diagnosis, parents described having two coexisting reactions. Parents reported feeling relief, acceptance, and validation that their concerns were recognized and that they could begin to pursue a treatment plan for how to address grief and a loss of expectations what their independence. Parents described this process as on going and evolving over time, often becoming more hopeful as treatment plans were implemented. Finally, analysis approach to the process of treatment selection. Parents described their information sources and barriers to treatment, followed by three questions that they asked when deciding whether or not to p ursue a treatment (i.e. evaluation of potential harm, their forward, parents described two questions that they asked when evaluating the effectiveness of treatments, and a cost benefit analysis in which they took into consideration the amount of time or also described their inter actions with health care providers and experiences with shared decision making. The following vignettes provide insight into the decision making process of two parents of children with ASD. Both parents were included in member checking and were presented w ith preliminary findings. They provided feedback and
137 insight about the grounded theory, describing how it was consistent or divergent from their experiences. As each vignette is presented, it is important to compare and contrast their experiences and consi der the factors that influenced their decision making process. For example, the available financial resources of the parents are juxtaposed, with one parent reporting a higher annual income and additional financial support from family members and the other reporting a lower annual income and significant barriers to treatment (i.e. insurance coverage for treatments). The vignettes allow for the theoretical application of barriers to treatment and the cost benefit analysis that is applied when determining whe ther or not to discontinue a treatment. Despite differences in available resources, it is helpful to understand the overlapping experiences of the two parents and the challenges they faced throughout the processes of diagnosis and treatment selection. Eac h vignette will begin with a description of the characteristics of the parent, child, and family, as well as their perceptions and beliefs about the cause of autism and the prognosis for their child. Moreover, the annual family income and educational backg round of the parents will also be provided. It is important to gain a sense of their family characteristics and perceptions, as they can impact the actions they take in the process of treatment selection. The grounded theory will be applied to their experi ences resources impacted how they made decisions about treatments. By providing descriptions through two vignettes, it will demonstrate how the theory can account f or
138 pursue. Vignette One: Victoria Victoria was a thirty five year old mother of a six year old boy diagnosed with year old son with speech following a long period in which she had noted concerns since the age of two. Her initial communication. She described that age, he was labeling objects rather than interacting with others. Victoria reported that revealed intelligence in the very superior range compared to other typically developing children, making it difficult to find the appropriate school placement for him. During this study, he was in a specialized Waldorf education program. Victoria had compl and was previously employed as an attorney. Currently, she was not practicing law so that she could coordinate care for her children. Her husband was thirty eight years old, currently employed as a public information specialist and graphic designer. Regarding her beliefs about the cause of autism, she indicated that she felt there was a strong genetic component, which contributed to vulnerabilities in the environment (i.e. se nsitivity to dairy, antibiotics). Annual family income was reported to be between seventy five thousand and one hundred thousand dollars. Additionally, Victoria reported getting additional financial support to pay for treatments from her mother and father. Current or previous treatment approaches included: applied behavior analysis, occupational therapy, speech therapy,
139 casein and dairy free diet, sensory integration therapy, biomedical interventions (i.e. B12 injections, folic acid, probiotics, omega oil, DMG), social skills groups, parent child interaction therapy (PCIT), hyperbaric chamber treatments, social stories, academic interventions (i.e. reading program), auditory integration therapy, and parent directed interventions (i.e. floor time program). Pr ocess of Diagnosis Victoria began with a description of her son, Ben, by describing his strengths and weaknesses and his early experiences as a child: Ben is six right now and he is REALLY smart and funny. He would be considered really high functioning bec ause he is very verbal and he has at the time that because he was so little, he was three when he got diagnosed with ASD, they said he would need to get retested for ADHD because they s got some traits. Anyway, He LOVES reading and he taught himself to read when he was little. He started reading and writing at 2 ! years old. I mean, REALLY reading. He was probably about 3 when he was reading on his own. But he memorized words, like he learned what a word looked like and memorized it. Then, he could read, if it was a word that he was familiar with. At 2 ! he could do it. And he wrote the word LOVE on the floor when he was 2 !. It was actually his 2 ! birthday [laughing]. I wanted to be was a baby, he was SUPER EASY. I know A LOT of kids on the spectrum are difficult babies. Ben was peaceful. He NEVER crie d. He put himself on a schedule. We made a joke that you could set your watch by when he needed to eat, when he needed to sleep, when he was hungry, tired, anything. So, it was really easy to figure out his cues. So, he would get a little fussy and we wou made really INTENSE eye contact. So, that was one thing, when we first had him tested by a speech pathologist when he was 18 months old, she was Initial c oncerns When Victoria was asked about her initial concerns, she indicated that she had watched online videos of both typically developing children, as well as children with
140 symptoms of ASD. While she reported that she initially received minimal affirmation from ot hers (i.e. friends, family), she noted that the videos provided confirmation that noticeable with ti me (i.e. delayed echolalia). Well, actually, those videos online about joint attention I found really that he had ANY. He made really intense eye contact and he was really into s point to stuff. He was very independent. So, he started, once he learned how he could roll over from his stomach to his back, he was a really strong baby. So, when he was 2 weeks old, he could roll from his stomach to his back. Once h e was 3 months old, he learned how to roll from his back to his stomach. And he figured out, immediately, I Then he started crawling at 5 months and walking at 8 months. He was never demanding because he just got it on his own. And he could entertain himself in his crib. So, when he would wake up, you could hear him talking to himself, but not crying. So, these were all FANTASTIC for started going to sleep at 9:00pm, and he had such a schedule, I remember. He was going to sleep at 9:00pm, waking up at 4:00am, eating, then goin g back to sleep until 9:00am. And then, he just dropped the 4:00am feeding probably at 4 5 months. So, it was like, you could I went back to work when he was 10 weeks old. His dad quit his job, so he was a stay at home dad until Ben was 18 months old. So have the joint attention. He did have flapping. And what is funny about especially when he was little, they have actually been very helpful, when parents post on their kids. And for me, learning about the joint attention, that was good! He did communication. I think that is the best way I have to explain it. I talked to the pediatrician about it and she referred us to a speech pathologist, which was our first step.
141 was 19 20 months old and he knew the alphabet and he could count to a ut, [expresses concern] he NEVER said Mommy. HE NEVER SAID MOMMA until he was 19 Mommy. It was because my mom took him to a Michelle Obama rally, so he heard Obama and he was act ually really good at repeating. Once he extent of it until I stopped working when he had just turned 2. I stopped working and I was hanging out with him all day. So, if we watched an it on the show, but he would try to use it in a conversation like a day later. However, he would say the sentence and it would be EXACTLY word for word the sentence from Curious G eorge. It might not fit, quite right in the situation . DELAYED ECHOLALIA of communication disorder. So, I talked with my pediatrician about it. online, and the initial actions she took following her concerns (i.e. contacting the gained a sense of affirmation from online videos depic ting children with ASD and reading, writing, intense eye contact) were interpreted by others as reason to have no concern about his development. However, she described having a persistent feeling that something about his presenting behaviors was not entirely typical. Victoria went on to describe her initial interactions with health care providers (i.e. pediatrician, speech language pathologist) and their reactions;
142 So, finally, after I talked to the pediatrician about it, I think she was pretty provider] and saw a speech language patholo gist there. She interviewed him and did stuff. Oh, and he also drooled a lot! He had really low muscle tone in his mouth. So he was like two and it was like drool factory So, the spe ech pathologist was a little more worried about his TONE, but starts talking more, he will get more TONE, and t hen THAT should WHILE we were sitting there, he did delayed echolalia. She said a sentence and it was like a couple minutes later when she was talkin g to me and he was listening and he was like repeated EXACTLY WHAT YOU JUST SAID 2 MINUTES AGO! But, he is not inte We went the first time and then we were supposed to wait 6 months, but I was pregnant and SUPER stressed out and I wa to that place [laughing]. It was really FRUSTRATING. With Ben, I understand it was a compl icated diagnosis. I also know that we were picking up on REALLY subtle things, REALLY EARLY. Especially in the beginning, I think people kind of felt like I was overreacting and that I was looking for something and being anxious about there and that I was looking for things. I was like initial health ca re provider/pediatrician and was subsequently referred to a specialist for pediatrician was favorable, as she described responsiveness as a result of listening to her conce rns and subsequently referring to a speech language pathologist for a more specialized evaluation. Secondly, she described interactions with the speech language
143 the pr evaluation, leaving Victoria to feel frustrated and discouraged. Finally, Victoria described the iterative process of continuing to notice concerns and seek expertise of health care providers by returning to the speech language pathologist on multiple occasions. Aff irmation from o thers Although Victoria reported that she did not initially receive affirmation from eers. She indicated that his teacher was happy to engage in a dialogue about her concerns presented to health care providers as an additional perspective; His preschool tea cher she was REALLY helpful. She was REALLY educated about kids with special needs. She was also really helpful and supportive in being like, okay, when we first went to get him assessed and classroom that he did and she would write long narratives for us so that we could take it to his providers for his diagnosis. Pediatrician and referrals to s pecialists Victoria further described the iterative process of seeking a diagnosis, returning to her pediatrician and receiving multiple referrals to other providers. Additionally, she described the delay and waiting time that she experienced between referrals;
144 [Following the speech pathologist visit] It w as a LONG TIME, because I yo developmental pediatrician, for a more intensive evaluation. I mean, if you that way. We have since switched pediatric LOVE my first pediatrician, but because the other pediatrician kind of specializes in kids with autism. So, then, we had to see [developmental pediatrician] and THAT was the biggest wait because apparently, he is IMPOSSIBLE to g et an appointment with [laughing]. I think that was, we had to wait 2 3 months and then he saw us. He sat down with us and interviewed me while Ben like him [pediatrician] because they evaluatio n. And we probably only had to wait a month in between that visit and the full psychological evaluation. So, it was MANY STEPS . Then we went and did the full evaluation. Then, we had to wait another three weeks and then we had to go in and see [psychologis at was helpful about that report, because it was a psychoeducational one, it had suggestions for school, therapies to o. wait time that occurred following provider referrals. She noted that her initial referral to the speech language pathologist occurred when her son was two years old a nd he did not receive his diagnosis until he was approximately 3 years, 3 months of age. Furthermore, she described multiple steps and interactions with providers when seeking a diagnosis for her son. The process of diagnosis required six provider contacts before receiving a diagnosis; an initial visit with her pediatrician, referral to a speech language
145 pathologist, an additional visit to the speech language pathologist, a second visit with her pediatrician, a referral to a developmental pediatrician, and finally, an intensive evaluation by a psychologist. Moreover, her description of interactions with her initial pediatrician resulted in satisfaction with care, especially when the pediatrician was noted to listen to and acknowledge her concerns and was res ponsive , initiating referrals to specialists. In many ways, Victoria was fortunate to have a pediatrician who was responsive to her concerns, as this was not always the case for other parents, inevitably delaying appropriate evaluations and diagnosis. Rea ction to Diagnosis describing her emotions, thoughts, and reactions: We took a little while to get the affirmation, but even that, it was honestly kind of a relief when we got it. It was both heart breaking and a relief when I got the affirmation from someone else because it started to get us out of ere starting to There was acceptance and relief because it affirmed what I had already been concerned about. Then, at the same time, you know, you have all the whole stages of grief or anything. I think I sort of fluctuated between both acceptance and relief, depending on what I was thinking about. It was empowering to get all the books. You go to conferences. You implement stuff and you get therapy. And sometimes those things work so well that it is very empowering and it is helpful. And then sometimes, you know, i f Ben has a is he going to be able to handle days on his own? If he is having a tough day, how is that going to work? gs is he going to be able to participate in or not participate in? Is he going to have friends? Are kids mean to him or bullying him or taking advantage of him? He so wants to interact with people and he likes telling jokes, but
146 sometimes they are weird an d not funny. Often, he takes things too far. I dressed independently. I mean, now he can do that. But some of th e things that take a lot of planning. They take a REALLY long time to work out. And when those are the things he is having trouble with, those can be he would poop in his pull up at night. He not a very helpful thing to say to me, because you DO see a lot of autistic when they are college age. You know, it is not reassuring to say those things that you would normally say. Some of those things, on the one hand, it was acceptance that we rea lly had to work at it and that it was going to be hard but we were going to get through it. Being able to go talk to [provider] at CARD [Center for Autism and Related Disabilities] who had a lot of experience with kids with autism and toileting it was ve ry empowering, but at the same time, it felt like having to do the laundry sometimes was very challenging and exhausting and felt rather hopeless. It was sort of both at once. I sort of fluctuated between having acceptance and feeling sadness. Every time w e would make a strive forward, and then take a step back, we would realize how far he had come. That was reassuring, exciting and hopeful. She described feeling acceptance and relief. On one hand, having the diagnosis validated her concerns and allowed he r to move forward in the process, no longer remaining in the cyclical process of seeking a diagnosis. On the other hand, she began would be met with obstacles. She describe d an ongoing process of coping with her her son was met with difficulties or challenges, she described sadness. She described empowerment associated with the implementat ion of treatments and interventions, and hopefulness based on his success and response to interventions.
147 Treatment Selection Information s ources treatment selection, seeking in formation about available treatments for her son. Victoria reported that her information sources for treatment recommendations included health care providers/reports, internet, the Center for Autism and Related Disabilities (CARD), conferences, and other p arents of children with ASD. Although unusual, she also cited insurance law as a source of information regarding treatments. Not surprisingly, this approach was likely influenced by her education and previous work as an attorney. I think I learned about b ehavior therapy and ABA [Applied Behavior Analysis], the specifics about it at conferences and then when I was learning about insurance coverage for speech therapy initially. It was a little challenging. Since I was a lawyer, I was researching about what t he law was in Florida because I knew there WAS a law about insurance coverage. So, for me, in the law, it specifically talked about ABA services being covered and that was when I looked into what providers there were Victoria noted th at she was surprised that providers had not suggested ABA as a treatment option; No one even mentioned ABA. Which, I thought in retrospect was kind of weird, because it is considered the GOLD STANDARD of treatments. I Fortunately, she obtained her information from insurance laws, as ABA was listed as a treatment covered by insurance coverage. She suggested that it would be helpful for professio nals to give parents a list of specific treatment providers and contact information, to eliminate the obstacle of tracking down the information; Having the list of providers would be helpful. I know that could be a complication for pediatricians or psychol ogists because if they are recommending me to someone, they probably want to have vetted and known the providers and that is the thing that would be difficult for them.
148 Even just having a list of, these are all the different places would be helpful, becaus e I know sometimes tracking down who provides what therapies can be REALLY challenging to sort out. So, I believe that we got a list from CARD and then I called around to see who had openings the fastest. Moreover, Victoria indicated that she had received recommendations for treatments and interventions in a report following a psycho educational evaluation. She described the recommendations that were made and how they could have been improved to fit the needs of her child; Yeah, and I think [the psychologi st] did provide recommendations for speech and occupational therapy in his initial report. They usually test things that were more geared toward school aged kids. However, the reco So the recommendations were good and it was really helpful. If it had been a little bit more tailored to the younger age, it might have been a little bit better. When specific recommend ations for treatment were not provided directly to Victoria, she described other approaches (i.e. searching on the internet, calling providers) to obtain information about treatments; I probably would look it up on the internet, figure out who does OT, spe ech therapy, and ABA and then call to find out what services were, if they were covered through insurance, and when he could get in. So, I think I did a lot of calling. Barriers to t reatment Within the process of information seeking, Victoria began to des cribe the barriers that her family faced when considering treatments. First, she reported availability of therapists as a barrier after one therapist no longer worked at the therapy location her son attended. Secondly, she described how her family attempte d to attend therapies at schedule/time and was not feasible
149 after several visits. Moreover, she described waiting for a time before another therapist became available , delaying access to speech or occupat ional therapy services; We saw that for a little while he was going to speech and OT at one place, and then they lost a therapist. So, we tried doing speech and OT at different places so that he could have both. But we could only do that a couple of times because it was too hard for our family to do that, so he was NOT in speech or OT for a little while when we were waiting for him to get a new therapist. We were waiting for one for a little while. So, it was kind of where things were available, what was av ailable, and how to work that out. Victoria went on to describe time as the most significant barrier to treatment. She noted that time was more flexible when she was not working and when her son was not yet attending school full time. She indicated that fi nancial burdens were not as significant for her family due to financial support from her family and insurance coverage for treatments; We were pretty lucky because we could be pretty flexible with time, so Ben was able to get a lot more therapy than he wou ld have if I would have been working and we were trying to schedule. We were able to pursue more, as my parents were helping us financially. So, some of the barriers, we were able to get around those. Definitely with the time factor now, we are running a l ittle more rigid. You know, you have to be in school 5 days/week and you have to get to school on time. That is a reason we it is necessary, but it was probably a year or two ago t hat we dropped OT and we had to cut back on ABA just because of all the scheduling stuff. That is a HUGE barrier. I think time was our biggest barrier. We were able to have financial support from my parents to help pay for what we did, so that was helpful . Also, I was able to figure out that insurance would fully cover ABA and it at least partially covered speech and OT. So, finances were less of a barrier for us. But, time has been an ongoing, SIGNIFICANT barrier. Victoria identified time as a barrier to treatment and a reason that she discontinued son received. She went on to describe her desire for her son to also have a balance in
150 his life and how the addition of therapie s and the requirement of school limited time for other extracurricular activities; He has limited ability to do afterschool play dates, because then, if we limits the amount of free ti me that we have to do other stuff. this study, but also illustrates the impact of family resources on the potential barriers to time fluctuated as a barrier based on her job time). Furthermore, financial barriers were not noted to be a significant barrier, given the annual family income and the addi knowledge as a lawyer contributed to her awareness of insurance coverage for treatments and directly impacted her abili ty to pursue services. When barriers such as description of her experiences pro vides insight into the factors that intervene within her decision making process and pursuit of treatments. Treatment s election Victoria went on to describe her process of treatment selection, posing three questions when deciding whether or not to pursue a treatment Is the treatment harmful? Does the treatment propose to address an area in which Ben needs support? difficulty (i.e. impact on money, time, or use of other trea tments)?
151 threat of harmfulness to her son. For example, she noted that hyperbaric chamber to i mplementing evidence based practices with empirical support, when her husband suggested alternative treatments, she indicated that she was willing to consider treatments that were not invasive; I have sort of said I am WILLING to do some of the alternative stuff because it is not invasive. Some of it has DEFINITELY helped. My husband, at one point, was talking about brain stimulation. I was like, wants to try when he is grown up, th THAT is the kind of thing that is maybe taking it too far electrical harmful. Well, I am NOT sure. I would IMAGINE it is not harm taking it a step further than I would be interested in doing. Moreover, when she perceived that a treatment was beginning to hurt her son, she would discontinue and re evaluate with her pediatrician. For example, when her son was taking B12 shots, she noted that he started to report that it was hurting. As a result, she responded by discontinuing until she could consult her pediatrician; He is starting to say that they hurt a lot. That is pretty NEW, so I am going to talk to the pediatrician that is going to hurt him. beginning treatments, but an ongoing question she would ask to assess whether or not the treatment was appropriate for her son. Victoria also asked the second assessment question Does the treatment propose to address an area in which Ben needs support? Victoria was able to describe each of the treatment approaches she used and provide reasoning for why she used
152 communication difficulties, speech therapy surfaced as an obvious treatment approach. Moreover, information sources for alternative treatments identified areas in which the example, her biomedical doctor provided information about hyperbaric chamber treatments, noting that it has been previously reported to be helpful for toilet training; We also did oxygen therapy. I think we did about 20 sessions. Actually, I had to go in the thing with him and it was relaxing [laughing]. I mean, honestly, t he [pediatrician suggested it]. She said, specifically it was when Ben was having a lot of trouble with potty training. She said that she had seen that sometimes, that [oxygen therapy] could be helpful. When Victoria perceived that the therapy was going to target an area in which Ben needed support, she considered it as a possibility for treatment. Finally, Victoria considered a third assessment question during the process of treatment selection Can th undue hardship or difficulty (i.e. impact on money, time, or use of other treatments)? intervening factor when deter mining whether or not treatments could be implemented without difficulty. As mentioned previously in description of her barriers to treatment, extracurricular activities. Once her son Ben began school, the available time to implement treatments significantly decreased and required Victoria to prioritize which treatments were most essential; wanted to do. Now, I
153 need to try scheduling is actually a REALLY BIG barrier, because you want to get the real life. I just feel like bala ncing restrictions and attempts at [treatments] with living a normal life. I like things that can be integrated into our life, where he can be living a normal life. I feel like there is SO MUCH value in just existing and learning about the world. Victoria or not pursuing additional treatments would hinder his ability to have a balanced life. Furthermore, when Victoria perceived that treatments would be difficult to integrate i nto had considered a GAPS (Gut and Psychology Syndrome) diet for her son, but decided ditionally, she questioned the evidence to support the diet; all about healing the gut. You start with JUST having bone broth for a week, and then you introduce other foods. It is NO T gluten and casein free. It is like they only do dairy that is cultured, maybe. Then there are limited grains. The diet itself is very tricky and our whole family would have enough evidence that it is worth reorganizing your life to do it. There are times when I have THOUGHT about it, because Ben does get constipated Eval uation of e ffectiveness which they determined whether or not the improvements their child was making justified the resources invested in the treatment. As treatments were imp lemented, Victoria described several assessment questions that she asked to evaluate the effectiveness of treatments
154 (i.e. improved speech, improved social interaction, more focused , etc.)? If so, do the improvements justify the amount of TIME and/or MONEY invested in the treatment? First, Victoria described the process of addressing the first assessment question determining if there were positive changes that were observed in Ben following the implementation of a treatment approach. Like many other parents, she utilized her own observations of changes, as well as data from therapists to determine the progress her son was making as a result of treatment. At times, resul ts could be directly linked to treatment objectives. For example, Victoria described the changes she speech and behavior therapy; What is really good about speech for B en is that there are certain changes we can see when he is working on different letter sounds. He does have articulation issues, but his pragmatic language has gotten better and he some of the changes that are more subtle, we can go in and talk to [the on behavior, we can see specificall y which things he is doing better or worse at. Additionally, Victoria described that sometimes it takes time to determine whether or not a treatment is working. She noted that longer intervals of time (i.e. 6 months) were necessary to allow time to observ I know, most of his therapist we get more formal reports every 6 months and that seems to be a good spacing of assessment. I get little check ins pretty much everyday when he goes to therapy, but to have a formal sit down for about 10 15 minutes when we have a chance to sit down and talk like grown ups about his progress, for me that works out really well, because every treatment and every therapy, it seems to always take a little while to settle in to really know how thi ngs are going. To have things get re evaluated a couple times a year seems to work really well because then you have enough time in between is this working? Sometimes the But, over 6 months, you can see him subtly improving. Then, you can take
155 a step back and see if he is improving or not improving, and then we decide what we need to do. If things need to be adjusted, when something is NOT working, I think people need to be open to th evaluation too quickly you have to give things time and get them into a routine and then you can really tell what is going to work and what is not. Some kids might need it more frequently, though. For Ben, abou t every 6 months has been good. indicated that she was more likely to discontinue a treatment. For treatments that were ime (i.e. several weeks) before evaluating whether or not it was working; Ben was doing listening therapy [auditory integration therapy]. We tried it to be doing it once or twice a da have HEARD that it works for kids, but we just stopped doing it because However, there were times when it was difficult to determine if a treatment was directly impacting changes in Ben treatment approaches being utilized, which is consistent with previous research that indicates that parents report using up to seven or eight treatments at one time (Green et al., 2006). Victoria unde rstood that it was hard to determine which treatment was most continue all of the treatments; Yeah, we were definitely trying lots of things. So, it is definitely hard to te ll sometimes to tell which treatment is the essential component. We try, as long as we can, to keep doing all of them. Nevertheless, like many other parents, it was not always possible to consistently pursue all treatments. Victoria described times when a treatment was discontinued by family choice or due to unforeseen circumstances (i.e. running out of medication). In a way,
156 this allowed for an informal experimental approach, as she could observe how the removal of the treatment may have negatively impacte introduce the treatment; Well, I think what we have done is that if you let something go and things go down hill, then you get back on it and bring it back and try it again. Sort of, individually dropping off or excluding one thing and seeing what changes you see. can try this. A lot of times what we see is that it can really help with language, communication, and really just DOES help his communication. So being able to see that is helpful. One call us noticed. Following evaluation of treatment outcomes, Victoria described the process of answering the second assessment question Do the improvements justify the amount of TIME and/or MONEY invested in the treatment? Given the limited resource of time, Victoria often evaluated whether or not a treatment was worth the time that she investe d in it. Additionally, there were times when Victoria indicated that Ben was already receiving support at school, and she could not justify the amount of time or money that he would spend in the same therapy outside of school, given the limited benefits of the treatment. For example, Victoria described how her son was developing motor skills at
157 school and she could not justify the time required for occupational therapy outside of school hours; I think the cost benefit analysis is definitely true. I have hea rd that, and anecdotally, I have heard that from all the parents that I know that have kids on the spectrum. That is what we do. is developing motor skills on the playground at sch ool. So that is something that we can let go, because it is helping, but it is not so much of a benefit that trying to work in an extra two hours a week is possible or reasonable, given that he is developing these things. He might develop them slower, but that is okay! We definitely used a cost benefit analysis. He had been really successful in OT, but we kind of decided that he s he getting that much out of it any more when he is going ABA, speech, and going to school and learning and doi ng all those gross motor stuff? When Victoria perceived that the cost or the time needed to implement the treatment outweighed the benefits that her son was getting from a treatment, she was more likely to discontinue the treatment. While Victoria applied the cost benefit analysis to all treatments, she especially emphasized the use of the cost benefit analysis when considering the effectiveness o f treatments with limited evidence base. For example, she reported applying the cost benefit analysis to the use of hyperbaric chamber treatments, or oxygen therapy; That was another [treatment] that had a time and money component because it was expensive and not covered by insurance. I think we were going two to three times per week for an hour at a time. Once we started toileting difficulties had improved and so we let it go because it was one that was less evidence based, and also expensive and time consuming .
158 We have definitely done that where we have looked at stuff that is less quite a bit, then we tend to let go of those treatments more quickly. When treatments were less evidence based, Victoria noted that she waited shorter period of time to determine if it was benefitting her son. Given that treatments with less evidence base are often not covered by insurance, it may be more likely that money will emerge as critical component of the c ost benefit analysis. Furthermore, it may be more difficulty for parents like Victoria to justify the amount of time spent in the therapy when time is limited. Just as many other parents described, Victoria noted that the process of treatment selection wa s cyclical moving through iterative steps of information seeking, needs, and evaluating the effectiveness of the treatments over time process is ongoi Shared Decision Making and Interactions with Providers Finally, Victoria was asked whether or not she experienced shared decision making when interacting with professionals throughout the process. She, li ke many other parents, described experiencing shared decision making with some professionals, but not others. She indicated that her current biomedical pediatrician took the time to sit down and discuss treatments, explain the rational for approaches and a sk Victoria questions about her preferences and experiences; pediatrician we have now is very into autism and is also interested in a lot of alternative approaches. In the past coupl e of months, there have been a lot on the gut brain connection and all the new studies they are doing about fecal matter transplants in mice, and anxiety, and all these things they are discovering about guts about how the stuff in your intestines affects your mental processing in ways that they are JUST getting really
159 hard evidence on now. There is still a lot of anecdotal stuff over time, and autistic. The really hard science is really catching up with the soft science part. I feel like because our pediatrician embraces not that she e mbraces soft science gets MUCH MORE in depth, asks a lot of questions. She does do the medical tests, but she will go through them stool samples and blood tests. She will look at different th ings and the way his body is processing enzymes. He has a genetic mutation and it makes it hard to process regular vitamin B. He has methylated folic acid and methylated vitamin D. that we talked about when we talked about those initially, but she did a very good job explaining what the tests were that she was doing, why they the things that we have done were things that we were getting into without based on medical tests or based on conversations with him. She has always been re ally receptive to his teachers and information from school. Also, his ABA therapist came to his school and did an observation early on in his therapy. Things like that have been really helpful for us. Especially with the pediatrician, to help make decision s about the things we would chicken pox vaccine. It is NOT that I think vaccines cause autism. It is because Ben has a really sensitive system and with his doctor WE made a decision coll aboratively with his pediatrician. We used a cost benefit autism, but within consultation with her, we make decisions together about his health and well being that are probably out of ma decisions based on the information we have now, we can make those decisions and feel like we are getting input from her that is from a really helpful perspective. It h elps us implement that cost benefit analysis so that we are keeping him and others healthy, but making decisions that will also help him and his system. used the words decision making. During her interactions with the pediatrician, she indicated that she felt well informed about treatments and played a role in health care decisions for her son. She appreciated when her pediatrician or ABA provider took the time to consider her
160 perceived that the pediatrician allotted the time necessary to discuss treatment optio ns and get to know her child and family. Overall, Victoria perceived her interactions with the biomedical pediatrician as positive and collaborative . Vignette Two: Stephanie Stephanie is a thirty nine year old mother of an eleven year old male diagnosed wi th Pervasive Developmental Disorder Not Otherwise Specified (PDD NOS), Sensory Processing Disorder, and Attention Deficit Hyperactivity Disorder (ADHD). She also has a seven year old daughter diagnosed with auditory processing disorder. Stephanie reporte d that her son had been diagnosed with PDD NOS at the age of ten and was currently in a general education setting. She indicated that he had previously been in a charter school before he was asked to leave, as the school indicated they were not able to mee t his needs. He was currently in a general education setting. five years science degree in psycholo gy and was currently self employed as a massage therapist and also worked two other jobs to support her family. Total family income was reported to be between thirty five thousand and seventy five thousand dollars, annually. While Stephanie indicated that genetic and environmental factors may largely contribute to autism. She emphasized the role of the environment, especially the increased presence of chemicals, pesticides, and electromagnetic radiatio approaches included: medications (i.e. Ritalin, Strattera, Vivance, Zoloft), social skills
161 group, massage therapy (i.e. cranial sacral therapy, Feldenkrais therapy), clay bath, and participation in a stu dy involving consumption of chia seeds. Stephanie began with a description of her son, noting his age and diagnosis. She immediately began describing how his diagnosis of PDD NOS has been a significant barrier to accessing treatments; My son, Zachary, is eleven years old. He has a diagnosis of PDD NOS, insurance will only pay for treatment if the diagnosis is ASD Autism Spectrum Disorder. So, what? We have a diagnosis and no treatment coverage? Things like Occupational Therapy cost $100 an hour and they want to see him twice a week. and played a noteworthy role in her treatment selection process. Stepha nie reported a lower annual family income than Victoria, despite the fact that she was working three jobs and her husband was also employed. Unlike Victoria, she did not report any additional financial support from family members. Process of Diagnosis Ini tial c oncerns When Stephanie was asked about her initial concerns regarding her son concerns regarding his appetite; I first started to suspect that he was not the average bear around three and a half years old. Pretty early on, I was [scrunching face] hink the most salient issue for him was eating. That was the furthest outside of normal that we could really point to. His eating was very limited. Not only
162 Affirmation from o thers Furthermo re, she noted that she began seeking affirmation from others by talking displayed symptom behaviors were typical compared to his peers; There was definitely a process of seeking affirmation from others. We had formed a play group of children the same age as Zachary, within a mon th of either side of his birthday. There were about five or six kids in that and so is doing this, is that always overtly but kind of in that subtl e way So, it is interesting because at least two other people in that group I t it turns out that these are kids on the spectrum as well [laughing]. There was kind of that safety in numbers feeling. When Zachary reached elementary school, Stephanie indicated that she was more certain that his symptoms were not typical for a child his age and were consistent with Autism Spectrum Disorder; By the time he was in elementary school, I was pretty certain this was not what other people were dealing with behind their closed doors. This was well outside the range of normal. Pediatricians and referrals to s pecialists As a result of her concerns, Stephanie indicated that she initially spoke to her pediatrician. Unlike Victoria, Stephanie was dissatisfied with her initial interaction with spend the necessary amount of time with her son to recognize his symptoms of ASD;
163 , appreciate that that is the first impression that people get from him. That is not to be undervalued, or overlooked. That is a WONDERFUL thing. But, then you spend an HOUR with him, TWO hours had. Not only she had changed pediatricians multiple times over the years, given her dissatisfaction with their care; have just a quirky little kid! You are fine! There is no need to seek ANY treatment or ANY When a sked how she felt when she received this reaction from pediatricians, Stephanie responded with anger and frustration. When pediatricians or health care providers did not validate her concerns or provide a diagnosis, she perceived that they questioned her a parent; It is saying all the issues that you are having are your own shortcoming, because if my child does not have a genuine, organic dysfunction or need for professiona l help, then it is assumed he is a totally normal person and I t insulting to the parent who is coming to them for help. They [pediatricians] are just spending five minutes with the child and they are not really listening to what the parent is saying. The parent is coming to them in a moment of stress and they are re cognizing the stress signals
164 e them like basically w hat it boils down to. Either your child is a jerk or you are in capable. Furthermore, Stephanie described how the process of diagnosis was cyclical. Given her ongoing concerns, she was persistent in seeking a diagnosis and returned to multiple professionals throughout the process; We went to about four or five specialists before we even got a diagnosis. read a book either by somebody on the spectrum or ABOUT somebody on the spectrum, it wa s like they WALKED into my living room, OBSERVED my househol d, and WRITTEN a book about it. After approaching several pediatricians, Stephanie sought an evaluation through a multidisciplinary center, in which several providers collaborated to conduct a dia gnostic evaluation; They had the occupational therapist, the speech therapist, and neurologist. They ALL did their diagnostic evaluation and then they all sat up as POSSIBLE got a whole list of diagnoses there ADHD and Sensory Processing disorder. Finally, Stephanie noted that her son received a diagnosis after being referred to a local psychologist. When he received his diagnosis, he was ten years old, seven years after reporting her initial concerns.
165 Reaction to Diagnosis Stephanie was asked how she felt after her son received the diagnosis of PDD NOS from the local psychologist. She noted that she felt acceptance and hopefulness, her reaction to his diagnosis as an ongoing process; I mean, for us, I had to kind of fight FOR the di agnosis. I had formed my own beliefs and then tried to get others to agree with me and push things along the way. Am I just making this up or is it real? I keep getting validation that this is real that he really is on the autism spectrum. So, it is kind of a little bit different than the usual reaction. I guess I came to the process of acceptance before getting the official diagnosis. I feel like we kind of moved into acceptance pretty quickly and easily. Like know. The conflict that I have is where to put my expectations for the future. I have high hopes. You know, looking around at other people who are now adults and for whom my autism s pectrum alarm goes off and I am like, with super powers. And if you can use those powers for good instead of spinning your own wheels and going nowhere, you could REALLY be one of th e game changers in this world. And so, I see that with Zachary. I think could really make a big difference in this world and really find a lot of happiness and satisfaction in his life. But as a parent, I feel a lot of responsibility to help guide him in that direction. Although Stephanie noted that she felt acceptance and hopefulness, she also reported that receiving helpful to be given information about the diagnosis and possible treatments, so that parents have t ime to process the diagnosis and know how to obtain information when they are ready;
166 to go next. That is what I mean by paralyzing. It is kind of, the face to face in the office ti me can be overwhelming because there are emotional reactions to what you are hearing. So, that is another thing having information to take home or having specific information to look up when you get home would be helpful to parents. Moreover, she struggl ed with the diagnosis of PDD NOS, given that her insurance company did not provide coverage for treatments without a diagnosis of Autism Spectrum Disorder. Stephanie understood that the new Diagnostic and Statistical Manual Fifth Edition would subsume al l diagnoses Disorder, and PDD NOS into one diagnostic label of Autism Spectrum Disorder (ASD). However, at the time of this interview, it remained unclear if the new diagnostic process would change the insurance coverage s Of note, Stephanie reported that she was no longer seeking a diagnosis other than PDD NOS. Although she felt that the diagnosis of PDD NOS did not provide access to services, she began to re evaluate the approach she took with her son. She noted that when she was seeking a diagnosis, she was happy to see the symptoms of ASD, in the hopes that professionals would see the symptoms as well. Once she decided to no longer seek a new diagnosis, she indicated that she was abl e to begin my untrained, unprofessional mind, [he meets ONLY thing that explains ALL of the symptoms, the overarching umbrella is AUTISM . Yes, you can nitpick and look at each of the deficits and each of the challenges this problem, this spectrum and these are the challenges that he faces under the autism to further diagnose AGAIN . Specifically because whe n we are in the process of diagnosing, it puts me in a mindset where I am HAPPY to see the autism symptoms. I am like LOOKING for them and celebrating them.
167 Where as, when I am not in a diagnosing point of view, I am looking at his neurotypical behaviors, celebrating those. So, I was just realizing in our interaction, it works better to be noticing and appreciating his neurotypical behaviors rather than trying to notice and search out his autistic behaviors. iagnosis was consistent with other parents. She described feeling acceptance and validation when she received the PDD NOS was unlike other parents who were interviewed. She felt frustration, possibly as the result of the lack of insurance coverage that she received from the diagnosis. While other parents acquired some insurance coverage of t reatments following a diagnosis, Stephanie felt that the diagnosis of PDD NOS limited her access to services. Treatment Selection Information s ources Following diagnosis, Stephanie reported her main sources of information when selecting treatments for Zac hary. Information sources included other parents of children with ASD, the internet, the Center for Autism and Related Disabilities (CARD), pediatrician, books, and results of an evaluation from a multidisciplinary center. Stephanie reported that her prima ry source of information were online groups which were composed of parents of children with ASD; Online groups were my biggest source of information online groups of other parents of children on the spectrum. I find those groups on Facebook and another w as a branch off of another parenting group in which I was already a part of. All of the people with spectrum issues kind of supported each other. The local attachment parenting group was just an online group of basically parents, mothers more specifically , who followed an attachment parenting philosophy. Positive discipline and there is a whole kind of you know, earthy, crunchy, spectrum there. It was a group that was online that would
168 hat information. We would also meet face to face as well. Is it helpful currently? Not really, because it is all basic. Like is this sensory processing disorder?! At the stage I am at now, I feel more tempted to help other people normalize their experience rather than gain insight myself. Normalizing is a big ingredient that I was seeking and I think others were seeking just knowing that I am not the only person dealing with it. Othe r people are sitting in their home with their child screaming because there is a tag s cratching their back [laughing]. Stephanie also reported that professionals directly provided information about treatments through conversations or as part of a written r eport. When professionals suggested treatments, Stephanie reported that it was helpful to have specific contact information. Like Victoria, she indicated that she was more likely to follow up with the recommendation when specific contact information was pr ovided to her; Each time that someone makes a specific recommendation, I follow up on it. That has been an effective way to kick me out of that hopeless stagnation. Give me a phone number or refer me. Really, that helps me to take action. Each time [treatm medication and the psychologist. Those are the western treatments that where tments that we have actually followed through with have been because it has been HANDED to us. to do, I humbly as , that has been very co mforting experiences helped inform aspects of her decision making process. When Stephanie
169 was asked what she knew about treatments before pursuing them, she noted that she kn ew a lot about medications from her prior training and education as a psychologist. When she was asked what she knew about some of the alternative approaches she much knowledgeable about the massage therapy approaches that her son received. Furthermore, she noted that she received information and treatment recommendations from co workers and in structors in her massage therapy school. As a result, her son received several free massage therapy treatments that were offered by co workers and friends from her massage therapy school; Again, I was in massage school at the time and so both of these peop le were my instructors and the cranial sacral [massage therapist] was one of my instructors. She is actually one of the co owners of the school and a friend of mine, so she was offering these sessions to me just out the kindness of her heart. Barriers to t reatment After describing information sources for treatments, Stephanie began describing the barriers that she faced when pursuing treatments for Zachary. Stephanie identified the following barriers to treatment: financial barriers and a lack of knowledge about available treatments. First, Financial barriers were most limiting for Stephanie and her family, given her annual family income and the lack of insurance coverage for treatments under a diagnosis of PDD NOS; I think for us, it was mostly the financia l barriers that stopped us from the financial barriers were in the way. But, I have heard that from other people. Even if you we re to find the right diagnostic code for occupational therapy services, issues stuff.
170 Unlike Victoria, Stephanie did not report time for treatments as a significant barrier. Rather, she indicated that financial coverage and cost of treatments were preventing her from pursuing services. Given that so few treatments were affordable, Stephanie noted that she was not able to pursue a large number of services. As a result, time was not a lim ited resource. Secondly, Stephanie emphasized a lack of knowledge about available treatments as a barrier to accessing services. For example, she wanted to pursue a social skills up; Finances would be a BIG barrier. Then, there is also just the KNOWING what the resources are. For instance, I would really like him to be in a social skills group right now. And that would probably be under, like a psychologist who would provide that. So our insurance will cover a ski the path to treatment options was not always obvious; When we were at the [multidisciplinary center] office, sitting around the tab pediatricians at that point. Upon their recommendation, pediatrician is the person to go to, then tell me which pediatrician you just as useless as the other pediatricians. I like her! I would be more likely to sit down f or a cup of coffee with her and go camping with her, but still kid! I KNOW he has super powers! What do we DO from here? What TREATMENT? Enough of the diagnoses. WHAT TREATMENT ? How a re we going to help him? Yeah, that would be the main take home from this conversation that I would hope you would take would be that the path to treatment is not obvious and it needs to be. If you are going to pursue a diagnosis, you need to also be offer ing a treatment. Otherwise, you are just labeling! What is the point of a label!?!?
171 You can even see that in the neurotypical world. It is easy for me to say, To say everything that is wrong with person X. But I feel like the only reason to have a diagnosis is if there is a treatment. has opened up to you and now we can actually make some progress that I approached diagnosis from the very beginning. That has not changed at all, but what I have found is that I have been offered all of these diagnoses and a pile of diagnostic codes and nothing that leads to treatment and that has been extremely frustr ating. she could pursue for her son. Moreover, she noted that due to her busy work schedule, it was difficult for her to take the time to research treatment options for Zachary. The other barrier would be a lack of time for researchin g what the options would be. I COULD SHOULD skills group right now which could possibly be through a good counseling psychologist that my insuran ce would reimburse for. But I am working three jobs right now. I am not sitting down at the end of the day when I get home at 10 figuring out where the [treatments are]. In that sense, it would be nice if it were a little more obvious where the available r esources are. The barriers that Stephanie reported directly impacted what treatments she was able to pursue for her son. As a result, she reported implementing fewer treatments and pursued more alternative treatments than Victoria. Treatments that she pur sued included: medications (i.e. Ritalin, Strattera, Vivance, Zoloft), social skills group (in school), massage therapy (i.e. cranial sacral therapy, Feldenkrais, therapy), clay bath, and participation in a study involving consumption of chia seeds. Treatm ent s election When selecting treatments, Stephanie reported that she went on ask three questions when deciding whether or not to pursue a treatment Is the treatment
172 harmful? Does the treatment propose to address an area in which Zachary needs support? Ca or difficulty (i.e. impact on money, time, or use of other treatments)? First, Stephanie and her husband assessed whether or not various treatment approaches were harmful; Is it harmful? I think that was a question my husband and I would both ask. Is it going to do any harm? Is there any risk to my child in trying this intervention? In particular, when trying variou s medications, Stephanie reported assessing whether or not the medications had negative side effects for her son. She kept a medication journal with information about the side effects of treatments so that she could return to her pediatrician with addition al information. During trials for several medications, she noted negative side effects that occurred for her son, leading her to discontinue their use; I guess Ritalin was the first medication that we tried for him. That definitely helped his attention, bu Focused, then high sort of thing. As you poured attention in, it brought him he was really into sponge bob. He would walk into a room and he would Okay, so we t ried the Ritalin and he got tics and bad headaches. So the Strattera was just the most HORRIBLE, AWFUL EVER exposed anyone to in my LIFE. It was HORRIBLE. He was just DE PRESSED . He the spark had gone out of his eyes. His teacher was REALLY uncommunicative with me. So, I was like guess we will keep just rea
173 THAT EARLIER like another central nervous system stimulant, but a slightly different pathway, or So, the reason why we changed things is because th ere were specifically negative effects that were very apparent and were outweighing the positive effects that we were seeing l ike headaches and eye twitching. When Stephanie perceived that the medication was harmful or caused negative side effects for Za chary (i.e. headaches, obsessions, tics, depression), she was more likely to discontinue their use and refrain from using the medications in the future. Stephanie reported asking a second assessment question when selecting counselor for her son, as she believed it was an appropriate treatment to address ed that she knew occupational therapy could financial barriers. Moreover, she also noted that she previously felt speech therapy could address his needs, but was not able t o pursue the therapy due to lack of insurance coverage; I REALLY feel like he needs occupational therapy for feeding, specifically. Both of [my children] have REALLY STRONG sensory issues around the mouth and VERY RESTRICTED diets of their own choosing. I think he needs occupational therapy. There was a time when I think he really could have used some speech and language therapy, as well. Had we had the proper diagnosis in order he would still benefit from that or not, or if that window has closed now that he is eleven.
174 Finally, Stephanie reported asking a third assessment question when making treatment selections undue hardship or difficulty (i.e. impact on money, time, or use of other treatments)? intervening factor when determining whether or not treatments could be implemented wi thout difficulty. Stephanie was creative and resourceful, trying to circumvent financial barriers by offering her massage therapy services in exchange for occupational therapy; Occupational therapy It seems like it would be the obvious treatment approach. He is diagnosed with sensory processing issues. What is it constantly agitating him and preventing him from getting good nutrition and stuff like that. We have just never been able to pursue occupational therapy. I have looked into doing massage exchanged for occupational Wh en assessing if paying for occupational therapy was realistic for her family, Stephanie determined that the financial impact it would have on her family (i.e. taking out a second mortgage on her home) was unreasonable. Moreover, Stephanie reported that a l ack of insurance coverage for treatments influenced her treatment approach; Oh yeah! It [lack of insurance coverage] has forced me to take more of an alternative therapy approach. We went to the initial occupational therapy diagnosis appointment and they s well, never mind then. We will figure it out. You know, my husband is a librarian and I am a massage therapist neither of us is in it for the money. It is just not fair. According to Stephanie, alternative treatments were affordable and were often short term, minimizing the financial investment needed for therapies. For example, she indicated that she had received some free massage therapy sess ions from her friend. Secondly, she indicated that her son had been involved in a temporary social skills
175 group within the context of school. In this way, he was able to access some necessary services at no cost to his family. Third, she indicated that co unseling services were accessible, as they were covered by her insurance company. Finally, she had tried treatment was inexpensive and brief, not requiring significant resources for implementation. Evaluation of e ffectiveness After beginning treatments, Stephanie reported asking two assessment questions when evaluating the effectiveness of treatments; or and if so, do the improvements justify the amount of time or money invested? I think it is that simple. Similar to Victoria, Stephanie reported answering the first assessment question by of a treatment. As administration of different medications. When she noticed positive changes without negative side effects, she was more likely to continue the medication. In add ition, she approaches. More specifically, when evaluating the impact of cranial sacral massage therapy, she reported anecdotal changes in his level of energy and sensitivity t o touch; BY FAR the absolutely MOST EFFECTIVE treatment he has received is belief that it is fused and thes e are static, but the reality is that there is a movement there that the fissures are not fixed, but there is a movement there. Cranial sacral therapy helps to unjam the parts that are fixed, so that the brain can breathe with the cranial sacral fluid. Y ou know, there is a membranal pulse of the cranial sacral fluid and the cranial sacral fluid is manufactured in your head and protects your whole spinal column. So, by
176 far it was the most effective treatment. I think it was by his left temporal lobe, or by his right temporal lobe, temporal bone was JAMMED. I am a massage therapist, as you can tell [sitting in massage therapy room], he across the room THINKING about touching him and he wou ld be like [deep scared voice]. I mean, he would let me taught his nervous system h ow to receive touch. So, it kind of looks like still holds on the head. So, the movement of it is therapist also sent us to a chiropractor that he has worked with a lot. So, wh at SHE found was a misalignment in his atlas, in the top of his spine that had been out since birth. So she could tell by the way that the muscles had developed around that lesion, that this had been a birth injury. In fact, his birth was very traumatic. H is head was too large to fit out THAT, it was SO COOL [smiling]! So, IMMEDIATELY after she first corrected that atlas, the krink in his neck was gone. He was like BUZZING around the house. He was SO CRAZY. Then, immediately afterwards, he would be really calm. I think we were doing that at the same time he was taking the Strattera, which would make him really agitated . Then, I would bring him to the cranial sacral only reason why we were able to sustain the Strattera for as long as we did is because we were doing the cranial sacral therapy at the same time and that was helping his nervous system reset. And so, the calmness was an immediate effect and the other thing was the therapist showed me some of cranial sacral moves to do with him different holds. So Zachary started allowing ME to do mass age with him. So, he always preferred the still holds, but he also started to let me rub his back and do some more actual massage on him. So it kind of had the effect of teaching his nervous system how to receive touch in a more effective way. While Stepha nie began describing how she evaluates the effectiveness of treatments, she acknowledged that it was difficult to determine what intervention was effective when about i at one time. Additionally, she indicated that two parts of her co existed at the same time.
177 she reported that it would be helpful to know what treatment was contributing to the positive changes; two pun re WHY he is improving, I just need some help. And then, time. Similar to Victoria, Stephanie also no ted that there were periods of time when one treatment was discontinued and she was able to evaluate how the removal of the treatment impacted her son; I think your statement about trying multiple treatments simultaneously makes me giggle because that is T OTALLY how we have always done it. there was a time when we were trying cranial sacral therapy and another m assage therapy basically two alternative therapies at once. Zachary made a real leap of development during those sessions and the time he could really credit for that. So then, sev eral months later, after we finished one of the massage therapies, we went back to a different cranial sacral therapists and Zachary had some great improvements with that. Looking back, I am thinking it was probably the cranial sacral therapy that was effe ctive for him rather than the other one. I think it has been helpful to stop a treatment for a while and then re introduce it to see what happens. Using that model has been helpful. If you stop that treatment, and there d I start that treatment again if there w perceived that the treatment had been effective. On the other hand, if a treatment was removed and there was no decline in his behaviors, she perceived that the treatment
178 had already been met. In this case, she decided not to re initiate the therapy. Stephanie reported asking a second question when evaluating the effectiveness of treatments Do the improvements justify the amount of TIME and/or MONEY invested in the treatment? When answering this question, Steph anie primarily used a cost benefit analysis to determine if the amount of time or money invested in the treatment justified the outcome; There is a cost benefit ratio that I would look at each time. For example, this treatment. This testing. This whatever it is is going to cost this much. Is it an outrageous amount? Even if it does NOTHING, am I going to miss consuming would it be? Can we afford the time that this treatment or experiment woul d take? He CERTAINLY ENOUGH out of it to justify the TIME . The office was really badly managed. We would wait an hour for him to be seen. Then, there RIDICULOUS When Stephanie perceived that the amount of time or money invested in a treatment did not justify the outcomes, she was likely to discontinue the treatment. However, she also indicated that when the amount of money was not a significant investment for her Shared Decision Making and Interactions with Pro viders Finally, Stephanie was asked whether or not she had experienced shared decisi on making with professionals throughout the process of treatment selection. Similar to Victoria and other parents, Stephanie noted that there were some professionals with whom she had experienced shared decision making and others with whom she had not. Spe cifically, Stephanie felt that she has experienced shared
179 decision making with professionals in the multidisciplinary center. However, she described dissatisfaction with her interactions with pediatricians and did not feel that she had experienced shared d ecision making within those interactions; pediatrician. I feel like I experienced it with [the multidisciplinary center] I reatment if you want to throw away your asking for a referral to the witch doctor or something like that. It was weird. So that was pretty much the last visit that we had with him I had no great loyalty to staying with that pediatrician. The pediatrician we have now is fine. I think she would agree with me, but I feel that she does not have much knowledge about spectrum issues. It is just not her specialty or anything she has experience with. So s really know what to recommend or what the landscape of autism treatments are. It sounds like that would be really wonderful to have someone who is more What are the options? would be AWESOME. decision making. When describing her interactions with the professi onals at the role in the process. On the other hand, when describing her interactions with pediatricians, she noted a lack of concern, judgment regarding her interest in occupational therapy, and a lack of knowledge about available treatments. Overall, Stephanie reported limited experience with shared decision making. Retrospectively, she felt that it would have been helpful to engage in shared decision making when select ing treatments for her son.
180 CHAPTER 6 DISCUSSION AND IMPLICATIONS The purpose of this study was to investigate the manner in which parents make treatment decisions for their children with ASD. Secondly, the study proposed to throughout the de cision making process. The study posed four research questions to learn more about this topic: 1)What factors influence parents to select treatments and/or disregard others? 2) What are the barriers to treatment? 3) How do parents evaluate the effectivenes within the decision making process? Interviewing was employed to gather rich, descriptive data and semi structured interviewing was utilized to guide conversations with parents throu gh out the process. Chapter 6 will provide an overview of the findings, discuss implications, and outline limitations to the current study and recommendations for future research. Discussion of the Findings Nine parent participants of children with Autism Spectrum Disorders provided rich, descriptive data about their experiences throughout diagnosis and treatment diagnosi s, and how they selected treatments for their child. Additionally, they described barriers that they faced in the process and how they evaluated the effectiveness of treatments. The sample included individuals who had all completed a high school education and at least some postsecondary education, and was comprised of career professionals. The children in the study were currently between the ages of six to twelve years old and had been diagnosed between 27 months and ten years of age.
181 The grounded theory p resented in the previous chapters indicated that parents go through cyclical processes of diagnosis and treatment selection. Within the process of diagnosis, parents experience multiple steps. First, parents reported recognizing initial concerns, often aro und the age of 2. This was slightly later than reported in previous research, which indicated that parents reported initial concerns to professionals around the age of 12 to 18 months (Coonrod & Stone, 2004; De Giacomo & Fombonne, 1998). Parents went on to seek affirmation from others to validate their provider with their concerns. Despite an emphasis on early identification and the availability of tools for early screening an d diagnosis of ASD (Wetherby et al., 2004), dismissed. Consistent with previous research, parents pursued a second opinion or itial provider did not make a referral or acknowledge their concerns (Ming et al., 2011). Parents described the process as cyclical, continuing through the iterative process of having concerns about their child and seeking affirmation and a diagnosis. They indicated that they contacted multiple professionals throughout the process, persisting when pediatricians or health care providers did not initially provide a diagnosis. This finding was consistent with previous research that indicates that parents of ch ildren with ASD often seek four to five professionals before receiving a diagnosis (Goin kochel, Mackintosh, & Myers, 2006). Overall the average age of diagnosis in the current study was 5 years of age, slightly higher than the typical age of diagnosis rep orted in the United States (Center for Disease Control and Prevention, 2014).
182 Following a diagnosis, parents described having a two part reaction to the diagnosis. Parents reported feeling relief, acceptance, and validation that their concerns were recogn ized and that they could begin to pursue a treatment plan for how to grief and a loss of expectations their child independence. Parents described this process as on going and evolving over time, often becoming more hopeful as treatment plans were implemented. resulted in a description of their approach to the process of treatment selection. Parents described their information sources and barriers to treatment, followed by three questions that they asked when deciding whether or not to pursue a treatment (i.e. e valuation of potential harm, their forward, parents described two questions that they asked when evaluating the effectiveness of treatments, emphasizing observable c and a cost benefit analysis that took into consideration the amount of time or money described their interactions with health care provide rs and experiences with shared decision making. To date, it has been unclear how parents make decisions about treatments. It has been suggested that parents ask some basic questions to facilitate their selection of treatments (Simpson, 2008). Findings fro m the current study indicated that parents do ask several questions throughout their decision making process. First, parents inquired
183 about the potential risks of treatment, indicating that they assessed whether or not a treatment was invasive or harmful . When parents perceived that treatments were contributing to negative side effects, they would discontinue the treatment and discuss concerns with their health care provider. In addition, parents reported that they asked questions about the anticipated out comes of treatment and whether or not treatments treatments could be incorporated into their lives without difficulty, taking into consideration available resources (i.e. time or money). Types of Treatments In regards to the number and types of treatments that parents pursued, they reported using a wide variety of treatment approaches. Similar to Green et al. (2006), the presence or absence of empirical evidence for treatments did not always differentiate between commonly used treatments and those that were rarely used by families. For example, many parents pursued treatments that they described as therapy, hyperbaric chamber treatments, chiropractic therapy, auditory integration therapy, biomedical interventions, and neurofeedback. Similar to findings by Green (2007), parents reported pursuing several treatments simultaneously. Several parents recog nized that this made it difficult to determine the efficacy of individual treatments. Implications The findings from this study have several implications for future work with parents of children with Autism Spectrum Disorders. While this study does not ass ert to apply to all parents of children with ASD, it provides a glimpse into the parents who shared their experiences and how professionals can support them throughout the
184 process of diagnosis and treatment selection. Implications for the current study wil l be discussed, as well as limitations and recommendations for future research. Identification and Diagnosis identification of symptoms of ASD. Screening tools such as the Mod ified Checklist for Autism in Toddlers (M CHAT) exist to help identify children at risk for having an autism spectrum disorder and are recommended by the American Academy of Pediatrics (AAP) to be utilized during developmental screenings at age 18 and 24 m onths (Chlebowski, Robins, Barton, and Fein, 2013). It is critical that pediatricians implement tools such as the M CHAT to help screen and identify children who are at risk, making subsequent referrals to specialists for diagnostic evaluations. Additional ly, it is important on their development and received affirmation from teachers, friends, fam ily, or other parents presented their concerns to pediatricians, they were often reassured that their child was fine or encouraged to use a wait and see approach to determine if their child would make developmental gains over time. There are several possible reasons that pediatricians do not recognize early indicators of ASD. According to parents, they felt that the amount of time pediatricians spent with their child contribute d to them missing early signs of ASD. For example, some parents indicated that their child engaged in delayed echolalia during the visit, repeating something that they had heard several hours or days earlier. Due to the brief nature of the visit with a ped iatrician, parents noted that their pediatrician did not always pick up on symptoms that parents identified
185 as concerning. Moreover, pediatricians did not always ask questions regarding the behavior outside the context of the visit. Additionally, several parents perceived that pediatricians did not want to alarm parents and were hesitant to suggest their child had an ASD. Having focused on parent perceptions in t his study, it is not possible to make conclusions about why pediatricians did not heed initial concerns of parents. It remains unknown the amount of training that pediatricians had received in identification of symptoms of ASD or the availability of screen ing tools in their current medical practices. children at risk for an ASD. Paren acceptance, relief, and vali dation , while also expressing grief and Despite the overwhelming nature of diagnosis and approach to numerous treatment options, it remains unclear how parents nosis. In the current study, parents were often tearful when discussing their reaction to diagnosis. One parent described the time the diagnosis while also trying t needs. Parents often sought out support from other parents of children with ASD, both online and in person. Throughout the process of interviews, parents expressed feeling grateful for the opportunit
186 wonderful to think this out with you. I have really appreciated the opportunity to revisit receive their own mental heal th support from psychologists, social workers, or are working with parents of children with ASD have the unique opportunity to assess how parents are coping with their providers as needed. Health Care Providers as an Information Source T he National Autism Center has compiled a parent handbook to Evidence comprehensive resource for parents. It outlines the importance of evidence based practices, information about ASD, research on established treatments, the importance of professional judgment and data collection, and the importance of culture, family value s, and parent involvement. By providing resources such as this for parents to take home, it allows them time to cope with the diagnosis and have materials that they can revisit long after their visit with a provider. Additionally, parents reported that it was helpful when professionals made specific treatment referrals, sharing contact information for available providers. When this occurred, parents reported being more likely to follow up with treatment recommendations. As suggested by Murray et al. (2007) , it is recommended that professionals work with parents to make collaborative treatment decisions and implement practices consistent with shared decision making. One of the most important roles of professionals is to research, identify, and share possible treatment options with parents, presenting information with honesty and neutrality (Murray et al, 2007). Parents will
187 likely benefit from professionals taking the time to discuss available treatments and whether or not they could be incorporated into the treatment recommendations. When professionals made suggestions which parents perceived as unreasonable, given their limited res ources (i.e. time, money), parents reported less satisfaction with care and noted that they were less likely to follow through with the recommendations. By providing care that is family centered, collaborative, and y be more likely to follow through with treatment recommendations. Barriers to Treatment Parents reported facing multiple barriers to treatments, many of which were consistent with previous research findings. Barriers to treatment include financial coverag e and time required to implement treatments (Ganz, 2007), lack of knowledge about treatments, limited availability, provider specific variables (i.e. fit of therapist, M oreover, limited financial coverage of treatments impacted the treatments that parents could pursue. As a result of these findings, several suggestions can be made to improve service delivery. First, it is important for professionals to openly discuss pote ntial barriers to treatment and help parents to problem solve ways that they can access services. For example, educating parents about insurance laws and coverage of treatments within their state can help them to advocate for their rights and needs. Second ly, parents desired services through a multidisciplinary center where multiple providers can collaborate to deliver services in the same location. By providing multidisciplinary and interdisciplinary services, parents can save time that would
188 otherwise be needed for coordinating care between professionals or transporting their child to other therapy locations. In order to address the barrier of availability, it is critical that professionals continue training and recruitment of qualified individuals who can provide services to children with ASD. Currently, parents report being on waiting lists before they are able to access treatments. In addition, the limited availability of providers makes it difficult to schedule appointments at times when it is most conv enient for the child and family (i.e. after school hours). Finally, it may be ideal for parents to work with a case coordinator who can help them to identify and initiate services and circumvent obstacles to treatment. Treatment Selection Given the curren t findings, there are several implications for how professionals can support parents in their process of treatment selection. After parents obtain information about treatments and assess barriers to treatment, they begin to ask several questions when decid ing whether or not to pursue a treatment. First, parents ask whether or not a treatment is harmful. Clinicians are called to recognize their ethical responsibility to share accurate information about treatments options, including uncertainties, benefits, a nd potential harms of treatment (Gulland, 2011). For example, just as pediatricians who prescribe medications are encouraged to take time to review possible negative side effects of medications, providers are encouraged to review possible harmfulness of ot comfort with the invasiveness of some procedures. Secondly, parents ask whether or support parents in this endeavor by providing specific, measurable goals that can be expected following implementation of a treatment. For example, if a behavior therapist
189 intends to focus on functional communication to reduce undesired behaviors, they could inform parents of the outcomes that they might expect as a result improvements in expressive and receptive communication or a reduction in behavioral outbursts. This would provide parents information about the targeted behaviors, as well as areas in which they can monitor wh en evaluating the effectiveness of treatments. Finally, parents ask whether or not a treatment can be implemented without undue hardship or difficulty. As discussed previously, professionals can assist parents by directly inquiring about barriers to implem entation of treatments and determine if the treatment is an appropriate fit for the family, given their preferences and available resources. Evaluation of Effectiveness The current study addressed a limitation from Shyu et.al. (2010), contributing informa tion about how parents evaluate the effectiveness of treatments. Parents reported asking two questions when they evaluated the effectiveness of treatments Do the improvement money invested into treatment? parents in answering these questions. First, providers have invaluable knowledge and training in assessment and measurement of treatment outcomes. Professionals are uniquely suited to collect and interpret data to evaluate outcomes of treatments. By sharing results of data collection, the burden of interpreting effectiveness of treatments is minimized for parents. Parents also reported trying simultaneous treatments, noting that it became more difficult to symptoms or behaviors. As a result, professionals are encouraged to openly discuss
190 with parents the treatment approaches they are using. While doing so, it is critical that respond with neutrality. Professionals may choose to present information about the presence or absence of empirical evidence for treatments and assess whether or not the treatment is harmful to the child. When parents perceived that professionals placed judgment on them for use of alternative practices, they reporte d being dissatisfied with their health care professional and at times, changed providers. Providers may assist parents in implementing trial periods of reversal, or A B A designs for treatments that can be ethically removed or reversed. In this case, provi ders would help parents to at baseline, (B) assessing the impact of a treatment after it is applied, and (A) measuring behaviors/symptoms without the treatment in place. I f the behaviors/symptoms return to baseline following removal of a treatment approach and improves when the treatment is resumed, then parents can have greater confidence in the efficacy of that treatment. This approach is simply one example of how profess ionals can collaborate with parents to measure the effectiveness of treatments. By assisting parents in the measurement of treatment effectiveness, the investment of tim e and/or money. Parents are more likely to answer this question independently, given that they are the most knowledgeable about their own family resources and whether or not their resources justify the outcome for their child. However, professionals can su pply information about the benefits of treatment and the
191 optimal outcomes of treatment to help parents prioritize treatments. Additionally, some parents reported that their child received sufficient therapies in school (i.e. OT, speech, social skills group s), minimizing the time and money parents invested in private therapies. By continuing to provide evidence based interventions within schools, the burdens of cost, time, and availability of treatments outside of schools are minimized for parents. Shared D ecision Making ealth care professionals, there are several implications for future practice. Parents reported preferred aspects of care that resulted in their positive perceptions of interactions with p roviders. First, parents perceived more positive interactions when they felt listened to and they believed that their concerns were acknowledged and valued . They noted that it was helpful when professionals were available when parents needed to contact the m with emerging concerns, or in the case of an emergency. They appreciated when professionals took the time to get to know their child, discuss treatment options with their family, and explain results of medical tests or treatments. Finally, they reported satisfaction when they perceived that they were viewed as an equal and collaborative partner in decision making. In other words, parents reported greater satisfaction with practices that aligned with shared decision making. By aligning care with practices of shared decision making and family centered care, professionals can foster more positive interactions with parents and greater satisfaction of care (Golnik et al., 2012). Limitations of the Study There were several limitations that should be noted regar ding the present study. Although the parents in the sample had a variety of financial incomes, ages, and
192 occupations, one cannot overlook their demographic similarities. The majority of the participants were female, Caucasian, and mothers, and all were mar ried. All had a high school education and at least some postsecondary education. Additionally, all parents were previously involved in a study at the local university, making it likely that the sample was not only adept at accessing resources, but also had extra time in their schedules to devote to their involvement in a research study. The purpose of this qualitative research is not to generalize findings to all parents of children with ASD, and therefore should not be interpreted as such. The study has pr ovided rich descriptions of participants and their experiences so that readers can determine the applicability of the findings to their own circumstance. The study represents the findings from this particular sample and emphasizes the commonalities across multiple participants in the current study, as well as consistency with previous research. Additional information regarding differences in culture, ethnicity, language, education, and marital status may provide further insight into other factors that contr making process. Regarding the chosen methodology, the researcher attempted to exercise prolonged engagement with participants to understand their experiences, culture, and decision making practice. By implementing two interviews with parents in the study and allowing them to choose a place in which they were comfortable sharing their experiences candidly, the researcher was able to develop rapport and establish trust to facilitate understanding of the phenomenon of decision makin g. However, the study was discussions of decision making. By setting up observations during interactions with health care professionals, the researcher may have gaine d additional information about
193 parent provider interactions and Shared Decision Making. Moreover, by observing discussions and decision making that occurred between spouses, further insight into decision making may have been acquired. Obtaining information from parents several years following their initial process of diagnosis and treatment selection required reliance on recall of previous events several years earlier. It is possible that conducting more recent interviews following the initial process of di agnosis may have contributed additional details that parents did not recall during the current study. This study sought to understand parent experiences and perspectives. Future research is needed on experiences and perspectives of pediatricians and other health care providers to more fully appreciate ongoing barriers to identification of symptoms of ASD and access to treatment recommendations. Additionally, more information is needed about pediatrician perspectives on the feasibility of implementing pract ices aligned with shared decision making. Parents reported higher satisfaction and more positive perceptions of providers who engaged in Shared Decision Making. Specifically, multiple parents in this study reported that the practices of their biomedical do ctor were more aligned with Shared Decision Making than their previous experiences with pediatricians or other providers. Questions remain regarding the barriers that pediatricians face, which are potentially impacted by systems level constraints, such as the time allotted to spend with patients or other clinical responsibilities (i.e. paperwork) (Carbone et al., 2010). In addition, during this study, all but one set of parent participants were interviewed without the presence of their spouse. During the c urrent study, several parents reported that they had previously disagreed with their spouse regarding which
194 treatments to pursue. For example, multiple participants indicated that their spouse had ch as brain stimulation) that the participants did not feel comfortable implementing. Another mother expressed that her husband prompted her to pursue a gluten free diet despite her resistance. This study does not capture information about how parents coll aborated to come to a consensus about treatment decisions. Finally, while this study was exploratory in nature and because research on its topic is scarce, the need for future research in the area remains. Though this study provides in depth examination of and treatment selection, it will be beneficial to gain more comprehensive understanding about steps in the process to strengthen resulting practices of health care providers. Recommendations for Futu re Research As with any study, questions remain at the conclusion of data collection and analysis and highlight possible directions for future research. Several future research studies are suggested to expand the findings of this research study and existin g literature. First, only parent perspectives were captured in this study and thus the provider/pediatrician perspective would be a valuable addition to this study. It would be helpful to interview pediatricians and providers about their perspectives and e xperiences when working with parents of children with ASD. In particular, it would be helpful to understand their previous training in screening and diagnosis of children with ASD to determine what they perceive as barriers to early identification and diag nosis. In addition, providers could be asked about their current resources (i.e. time, knowledge of community providers) to identify gaps in service delivery that may contribute to limited discussions of treatment choices. For example, parents in the curre nt study perceived
195 that a lack of time spent with pediatricians resulted in them overlooking symptoms of ASD and a subsequent delay in diagnosis. It may also be helpful to observe parent provider interactions to collect additional information about facilit ators and barriers to shared decision making. Secondly, the process of evaluating treatment effectiveness warrants further research. Given that limited research beyond this study exists, a more comprehensive veness is needed. In particular, further investigation of the use of the cost benefit analysis may be necessary to understand how professionals can support parents in the process especially helping to document and share data on the positive outcomes of e vidence based practices. Moreover, parents reported pursuing multiple treatments simultaneously, noting that it was difficult behaviors. By conducting more focused intervie ws on this process of evaluation, parents may provide insight into ways that they were able to decipher what treatments were effective versus those that were not. A unique comparison could also be made to parents who evaluate effectiveness in collaboration with a provider or case manager to determine if the presence of an individual trained in experimental design helps parents to more effectively make conclusions about the impact of a particular treatment. a in which further research is necessary to determine how they can best be supported throughout the process. Given the pressure to pursue treatment for their child and limited time and financial resources, During the current study, parents often displayed a range of emotions, including
196 diagnosis and the obstacles that they faced during their decision making process. To needs following diagnosis. In particular, a focus group of parents who recently received strategies which they utilize, and their unmet mental health needs. By addressing be better equipped and empowered to effectively advocate for their children needs. Finally, a larger scale study utilizing both quantitative and qualitative methods demogra phic variables are consistent with the experiences of parents in this study. Specific questions about aspects of the process may be targeted through questionnaires, which could also provide open or utilize interviews following the completion of analysis of quantitative data. For treatment choices, but asking more open ended questions to target how they made decisions to select the treatment : 1) Tell me about the perceived harmfulness of this treatment; 2) How were the anticipated outcomes of this treatment consistent or your family, given your available reso urces (i.e. time, money)? By integrating the strengths of both methodologies, the conclusions of the research may be strengthened
197 and the limitations of each independent approach may be reduced, thereby resulting in a more comprehensive and representative
198 APPENDIX A INFORMED CONSENT FORM Informed Consent Please read this consent document carefully before you decide to participate in this study. Protocol Title: making Process in Choosing Treatments for Their Child with an Autism Spectrum Disorder (ASD) Purpose of the research study: To understand how parents make decisions about treatments for their child with ASD. What you will be asked to do in the study: You are being asked to participate in this study because you have been identified as a parent of a child with an Autism Spectrum Disorder. During participation in a prior research you noted your interest in participating in future research studies. As a pa rticipant, you will be asked to complete demographic information about yourself and your child, and participate in 2 3 interviews, each lasting 1 2 hours. You will not have to answer any question you do not wish to answer. Your interview will be conducted in person at a place agreed upon by you and the researcher, after receipt of a copy of this signed consent. With your permission, all interviews will be audiotaped. The researcher will be the only person with access to the tape which will be personally tr anscribed, removing any identifiers during transcription. The audio tape will then be erased. Your identity will be kept confidential to the extent provided by law and your identity will not be revealed in the final manuscript. Time required: 1 2 hours/i nterview, for 2 3 interviews, for a total time requirement of 3 to 6 total hours. Risks and Benefits: The potential risks of the study include that you may become fatigued from interviews lasting 1 2 hours. In addition, you may feel distressed when talki diagnosis of autism or treatment selection process. There is no compensation or other direct benefits to you as a participant in this interview. You are free to withdraw your consent to participate and may discontinue your participati on in the interview at any time without consequence. Confidentiality: Your identity will be kept confidential to the extent provided by law. Your information will be assigned a pseudo name during transcription. The list connecting your name to this pse udo name will be kept in a password protected encrypted file. When the study is completed and the data have been analyzed, the list will be erased. Interviews will be recorded by audio tape. These interviews will be transcribed, removing all identifiers, and the audio tapes will then be deleted. Transcripts will be stored on a password protected computer, and encrypted to protect the information you have shared. Your name will not be used in any final manuscript.
199 Voluntary participation: Your participati on in this study is completely voluntary. There is no penalty for not participating. Right to withdraw from the study: You have the right to withdraw from the study at any time without consequence. Whom to contact if you have questions about the study : You may contact us if you have any questions about the procedures of the study. Jill (Welsh) Pineda , M.Ed., School of Special Education, School Psychology, and Early Childhood Studies (SESPECS) Nancy Waldron, Ph.D., School of Special Education, School Psychology, and Early Childhood Studies (SESPECS) Whom to contact about your rights as a research participant in the study: IRB02 Office (Address removed) Agreement: I have read the procedure described above. I voluntarily agree to participate in the procedure and I have received a copy of this description. Participant: ____________________________________Date: _________________ Principal Investigator: ____________ ________________Date: _________________ Jill ( Welsh ) Pineda , M.Ed. Sc hool Psychology Doctoral Student
200 APPENDIX B INTERVIEW GUIDE First Interview purpose: establishing rapport, learning a bout the child, process decisions surrounding treatment selection. Child Information/Rapport/Causal Beliefs 1. Tell me about your child. 2. Please describe the process of finding ou 3. How did you feel after you found out the diagnosis? 4. What do you think about this disorder? 1. What do you believe is the cause of autism? 2. What do you believe is the prognosis for your child? Treatment Selection 5. What treatments is your child receiving now? 6. Think back to any previous treatments your child received. What were they and when did they receive them? 7. Who were the key sources of information/discussion when making a decision (family, friends, pediatrician , other parents of children with autism, school personnel, media, internet, etc.)? OR Where did you get information about treatments? 8. Why did you select these treatments? 9. What did you know about the treatment before or when you selected it? Second Intervi ew purpose: To clarify and gain a deeper understanding of information presented in the initial interview and ensure validity of interpretation of the data collected, providing the interviewer a chance to obtain feedback from the participant regarding the a ccuracy of interpretation from interview. Evaluation of Effectiveness 1. How do you evaluate the effectiveness of the treatments your child receives? Changes in treatment 2. What treatments did you try previously and why did you stop? 3. If you changed treatme nts at any point, what influenced your decision? Treatment appeal/barriers 4. What qualities of a treatment make it appealing?
201 5. What structural/service barriers have prevented you from accessing treatments/services? 6. Are there certain services you do not pursue? Why? Shared Decision Making 7. To what extent did you engage in shared decision making with other professionals (e.g. pediatricians, psychologists, school providers)? 8. How can professionals be helpful to you when making decisions about treatments? Thi rd Interview purpose: (selected participants) To further explore areas in which the selected participant had great insight, as well as to validate the interpretations of the interviewer through member checking. Questions or discussions were developed, based on the results of t he analysis of all first and second interviews.
202 APPENDIX C PARENT DEMOGRAPHIC INFORMATION FORM Demographic Information: Please complete any demographic information you are willing to share. Child Demographics Age of child: _______ NOS School Setting (General Education/ESE classroom): _________________________ Parent/Guardian/Family Demographics: Number o f siblings/ages: _________________________________________ Age of parents/guardians: ____________________________________ Marital Status (Circle one): Single Married Other Mother Highest level of Education Completed/Degree: ______________ ______________________ Mother Occupation: ________________________________________________________________ Father Highest Level of Education Completed/Degree: _____________________________________ Father Occupation: ________________________________________ _________________________ Ethnicity: _________________________________________________________________ Family Income Level: (Circle one) Under $15,000 $15,000 $24,999 $25,000 $34,999 $35,000 $49,999 $50,000 $74,999 $75,000 $99,999 $100,000 $149,999 $150,000 $199,999 $200,000 or more
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206 Jacobson, J.W., Foxx, R.M., & Mulick, J. A. (2005). Controversial Therapies for Developmental Disabilities: Fads, Fashion, and Science in Professional Practice. Mahwah: Lawrence Erlbaum Associates. Jarbrink, K. & Knapp, M. (2001). The economic impact of autism in britain. Autism, 5 (7), 7 22. doi: 10.1177/1362361301005001002 Leech, N. L., & Onwuegbuzie, A. J. (2008). Qualitative d ata analysis: A compendium of techniques and a framework for selection for school psychology research and beyond. School Psychology Quarterly , 23 (4), 587 604. doi: 10.1037/1045.18126.96.36.1997 Lempert, L. (2007). Asking Questions of the Data: Memo Writing in the Grounded Theory Tradition. In A.Bryant and K. Charmaz, (Eds.), The SAGE Handbook of Grounded Theory (pp.245 265). London: SAGE. Levy, S., Mandell, D., Merhar, S., Ittenbach, R., & Pinto Martin, J. (2003). Use of complementary and alternative medicine among children recently diagnosed with autistic spectrum disorder. Developmental and Behavioral Pediatrics, 88 , 666 670. Luyster, R., Gotham, K., Guthrie, W., Coffing, M., Petrak, R., Pierce, K., . . . Lord, C. (2009). The autism diagnostic observation Sc hedule Toddler module: A new module of a standardized diagnostic measure for autism spectrum disorders. Journal of Autism & Developmental Disorders , 39 (9), 1305 1320. doi: 10.1007/s10803 009 0746 z Mandell, D. S., Listerud, J., Levy, S. E., & Pinto Martin , J. (2002). Race differences in the age at diagnosis aiming medicaid eligible children with autism. Journal of the American Academy of Child & Adolescent Psychiatry , 41(12), 1447. Mercer, L., Creighton, S., Holden, J., & Lewis, M. (2006). Parental perspe ctives on the causes of an autism spectrum disorder in their children. Journal of Genetic Counseling, 15, 41 50. Merriam, S. (2009). Qualitative Research: A Guide to Design and Implementation. San Francisco, CA: Jossey Bass. Mickelson, K.D., Wroble, M., & Journal of Applied Social Psychology, 29 , 1263 1292. Ming, X., Hashim, A., Fleishman, S., West, T., Kang, N., Chen, X., & Zimmerman Bier, B. (2011). Access to speci alty care in autism spectrum disorders a pilot study of referral source. BMC Health Services Research, 11 (1), 99 104. doi: 10.1186/1472 6963 11 99
207 Murray, M.C., Umbarger, K., Rade, G., KarinAldridge, K., & Niemeyer, J. (2007). Supporting family choice. Early Childhood Education Journal , 35 (2), 111 117. doi: 10.1007/s10643 007 0191 6 National Autism Center. (2009). The national standards report, 1 174. Retrieved from http://www.nationalautismcenter.org/pdf/NAC%20Standards%20Report.pdf National Confere nce of State Legislatures. (2012). Insurance coverage for autism. Retrieved August 13, 2012 from http://www.ncsl.org/issues research/health/autism and insurance coverage state laws.aspx The National Professional Development Center on Autism Spectrum Disorders. (2012). Evidence based practices . Retrieved from http://autismpdc.fpg.unc.edu/conte nt/evidence based practices New York State Department of Health Early Intervention Program. (1999). Clinical Practice Guideline Report of the Recommendations for Autism/Pervasive Developmental Disorders. New York State Department of Health, Albany, NY. Od om, S. L., Collet Klingenberg, L., Rogers, S. J., & Hatton, D. D. (2010). Evidence based practices in interventions for children and youth with autism spectrum disorders . Preventing School Failure, 54 (4), 275 282. doi: 10.1080/10459881003785506 Rhoades RA , Scarpa A, Salley B. (2007). The importance of physician knowledgeof autism spectrum disorder: results of a parent survey. BMC Pediatrics7 (37). Salzburg Global Seminar. (2011). The Salzburg statement on shared decision making. Retrieved August 13, 2012 fr om http://press.psprings.co.uk/bmj/march/Salzburg.pdf perceptions of autism spectrum disorder etiology and rec urrence risk and effects of their perceptions on family planning: Recommendations for genetic counselors. Journal of Genetic Counseling, 18, 507 519. medicine treatments fo r their children with autistic spectrum disorder. Journal of Autism and Developmental Disorders, 40 (4), 494 503. doi:10.1007/s10803 009 0891 4 Shyu, Y. L., Jia Ling Tsai, & Wen Che Tsai. (2010). Explaining and selecting treatments for autism: Parental exp lanatory models in taiwan. Journal of Autism & Developmental Disorders , 40 (11), 1323 1331. doi: 10.1007/s10803 010 0991 1
208 Simpson, R. L. (2008). Children and youth with autism spectrum disorders: The search for effective methods. Focus on Exceptional Child ren, 40 (7), 1 14. Retrieved from https://search.ebscohost.com/login.aspx?direct=true&db=tfh&AN=36656748&site =ehost live Strauss, A. & Corbin, J. (1990). Basics of Qualitative Research . Newbury Park, CA: SAGE Publications. Strauss, A. & Corbin, J. (1998). Basics of Qualitative Research: Second Edition. Thousand Oaks, CA: SAGE Publications. Turnbull, A., Zuna, N., Hu, X., Kyzar, K., Summers , J. A., Turnbull, R., Obremski, S. ( 2010). Knowledge to action guides. Teaching Exceptional Children , 42 (3), 42 53. Retrieved from https://sear ch.ebscohost.com/login.aspx?direct=true&db=aph&AN=47798155&sit e=ehost live U.S. Department of Education. (2008). No Child Left Behind. Washington, DC: Author. Retrieved June 14, 2012, from http://www .ed.gov/nclb/landing.jhtml Weiner, C. (2007). Making Teams Work in Conducting Grounded Theory . In A.Bryant and K Charmaz. The SAGE Handbook of Grounded Theory . London: SAGE.
209 BIOGRAPHICAL SKETCH Jill Lynn Pineda was born in Winter H aven, Florida. Daughter of Earla and Jim Turcich, she grew up as the oldest child with one sister, Holly. She spent her childhood years in Plant City, Florida and graduated from Plant City High School in 2005. From there, she went on to attend the University of Florida i n Gainesville, Florida. Jill graduated cum laude from University of Florida in 2009, earning a Bachelor of Science degree (B.S.) in psychology and a minor in education. Afterward, Jill began her graduate studies at the University of Florida. She earned her Master of Education degree (M.Ed.) in school psychology in 2011. Throughout the last five years, she completed several practicum experiences across public schools and clinical and hospital settings. Throughout these experiences, she acquired training in t he areas of assessment, intervention, consultation, and systems level service delivery. Specifically, she specialized in working with children with low incidence disabilities, and in particular, children with autism spectrum disorders and children who are deaf or hard of hearing. To finalize her formal graduate training, Jill completed a 12 month internship at Kennedy Krieger Institute and Johns Hopkins University School of Medicine in Baltimore, Maryland, obtaining specialization through two 6 month rotati ons in Neuropsychology and Behavioral Psychology. Jill plans to obtain her Doctor of Philosophy degree (Ph.D.) in school psychology from the University of Florida in August 2014. She will be completing post doctoral training as a clinical fellow in psychol ogy at Massachusetts General Hospital and Harvard Medical School.